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Can medication management smooth the journey for families of autistic children?
Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.
Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.
Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.
Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.
Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.
We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.
The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75 mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.
ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.
Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.
There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.
NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.
Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.
Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.
Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
References
Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.
Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.
Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.
Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.
Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.
Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.
Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.
We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.
The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75 mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.
ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.
Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.
There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.
NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.
Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.
Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.
Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
References
Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.
Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.
Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.
Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.
Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.
Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.
Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.
We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.
The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75 mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.
ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.
Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.
There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.
NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.
Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.
Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.
Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
References
Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.
Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.
There are new things we can do to improve early autism detection
We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.
Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.
Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.
One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.
Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.
Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.
The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.
Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.
An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.
The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.
Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.
The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.
The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.
Other screening tools
You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.
- The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
- The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
- Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.
Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.
We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.
Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.
Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.
One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.
Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.
Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.
The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.
Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.
An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.
The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.
Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.
The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.
The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.
Other screening tools
You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.
- The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
- The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
- Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.
Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.
We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.
Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.
Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.
One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.
Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.
Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.
The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.
Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.
An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.
The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.
Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.
The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.
The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.
Other screening tools
You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.
- The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
- The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
- Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.
Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.
Since when does providing pediatric care require courage?
I have been noticing “jokes” lately about doctors. Magazine cartoons depict doctors as conveying a bad prognosis in abrupt, indirect, vague ways. I remember, from medical school, the joke about pediatricians being doctors for patients “from the waist up” – wimps about tough topics such as sexuality. As an inherently shy person, I have appreciated the structure of the contractual relationship with families that both gives me permission and requires me to be direct about topics that would not be socially acceptable to discuss in other relationships.
Examples include our asking about bowel movements, genital symptoms, marital conflict, past abortions, food insecurity, adherence to medication, history of trauma or discrimination, substance use, illegal conduct, and suicidal ideation, among others. By bringing up these topics nonjudgmentally and with skill, we are demonstrating openness and making it safe for the patient/parent to ask questions about their own concerns.
Since these may be topics for which we lack knowledge or have very little power to help, it is far easier to not bring them up. Yet failing to have the courage to elicit sensitive information may delay the correct diagnosis, result in inappropriate tests or treatments, or miss factors critical in either the cause or solution for the patient’s problems.
Historically, being a physician has conveyed a promise of confidentiality and always trying to do what is best for the patient. The fact that we had to swear an oath to do so may also indicate that these things are not easy to do.
Yes, we need a lot of knowledge to know what is truly in the patient’s best interest. But we need to take personal risks to do it as well. There have been times when a parent has shouted “That is none of your business” at me or stormed out. Although only one patient has ever connected when striking out at me, other clinicians have not been as lucky (or had such small patients); some have even been killed.
For those of us in private practice, upsetting a patient with our well-intentioned words may mean losing them from our income stream or having them post negative comments online, which may affect our reputation in the community. Patients may not return for needed follow-up if a conversation was too uncomfortable for them. Current political divisions make this even trickier.
These days anxiety about getting behind in seeing the next patient may be a covert reason for avoiding difficult conversations as tears or anger take extra time. Certainly, fears of these outcomes can make us hold back from talking about important but potentially upsetting topics.
Of course, courage does not just mean being direct with questions, stating your observations, or giving advice. Courage requires thoughtfulness about possible adverse outcomes and their effect on others. It is not just “stupid bravery,” to proceed even when sensing danger. Courage is thus best paired with skill. It is:
- Setting up potentially difficult discussions with privacy (from the child or parent), seating, and enough time to listen.
- Normalizing questions by saying “I ask all my patients about ...” so patients do not feel singled out.
- Asking the patient or family first what they think is going on and how their own culture might regard the issue.
- Using simple language and arranging a translator when needed.
- Not just stating facts but checking “to be sure I explained well enough” rather than setting a patient up to appear ignorant for not understanding.
- Offering to contact the patient or other family member/support soon to review what you said and answer more questions.
- Offering a second opinion option.
- Promising to get more information when you do not know.
- Always leaving room for hope and sharing in that hope with them.
And it is crucial to have a way to keep notes about past trauma or difficult topics for a patient so neither you nor subsequent clinicians unnecessarily ask about sensitive topics.
Courage includes facing difficult situations without undue delay. Making that call about an abnormal test result right away, even when you are tired and upset, takes courage. Each time you overcome your own reluctance it takes moral strength but tends to make future courageous acts easier. Speaking up to a specialist on rounds when you think he or she is incorrect takes courage to serve the patient’s best interest. Being willing to try a new workflow in your office takes the courage to risk looking awkward or being judged by your team, but can be essential to progress. Asking for help or an opinion, sometimes from a medical assistant or student, can take courage but may reduce status barriers and improve relationships. Standing up for your values when they are not popular may take courage in some organizations. It takes courage to admit a mistake, even when your mistake may not otherwise be noticed.
How can we grow in courage? T. Berry Brazelton, MD, was a model of courage for me during my training – able and willing to tell about a child’s delays or ask about a parent’s well-being with empathy and by giving hope. Dr. Brazelton, pediatrician, developer of the Neonatal Behavioral Assessment Scale, professor at Harvard Medical School and founder of its Child Development Unit, was a world-renowned educator about the development of children and founder of the Touchpoints program. Our goal should be to promise to partner with the family in dealing with the problem, no matter how difficult or tender. I hope you had role models who not only said what to do but also demonstrated it with patients.
We had the privilege of hearing stories of difficult situations from hundreds of pediatricians in group sessions over the years in the Collaborative Office Rounds program. What group members often said that they valued most from these sessions was hearing examples of words they might say in these cases, either modeled by the coleaders or suggested by their pediatrician peers. Opportunities to share the tough times with trusted empathic peers is an important resource rarer and thus even more worth securing for yourself.
Being courageous may not be natural part of your personality but Aristotle said, “We become what we repeatedly do.” Even if you do not consider yourself so now, with practice you can become courageous and reap its benefits for your patients and yourself.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
I have been noticing “jokes” lately about doctors. Magazine cartoons depict doctors as conveying a bad prognosis in abrupt, indirect, vague ways. I remember, from medical school, the joke about pediatricians being doctors for patients “from the waist up” – wimps about tough topics such as sexuality. As an inherently shy person, I have appreciated the structure of the contractual relationship with families that both gives me permission and requires me to be direct about topics that would not be socially acceptable to discuss in other relationships.
Examples include our asking about bowel movements, genital symptoms, marital conflict, past abortions, food insecurity, adherence to medication, history of trauma or discrimination, substance use, illegal conduct, and suicidal ideation, among others. By bringing up these topics nonjudgmentally and with skill, we are demonstrating openness and making it safe for the patient/parent to ask questions about their own concerns.
Since these may be topics for which we lack knowledge or have very little power to help, it is far easier to not bring them up. Yet failing to have the courage to elicit sensitive information may delay the correct diagnosis, result in inappropriate tests or treatments, or miss factors critical in either the cause or solution for the patient’s problems.
Historically, being a physician has conveyed a promise of confidentiality and always trying to do what is best for the patient. The fact that we had to swear an oath to do so may also indicate that these things are not easy to do.
Yes, we need a lot of knowledge to know what is truly in the patient’s best interest. But we need to take personal risks to do it as well. There have been times when a parent has shouted “That is none of your business” at me or stormed out. Although only one patient has ever connected when striking out at me, other clinicians have not been as lucky (or had such small patients); some have even been killed.
For those of us in private practice, upsetting a patient with our well-intentioned words may mean losing them from our income stream or having them post negative comments online, which may affect our reputation in the community. Patients may not return for needed follow-up if a conversation was too uncomfortable for them. Current political divisions make this even trickier.
These days anxiety about getting behind in seeing the next patient may be a covert reason for avoiding difficult conversations as tears or anger take extra time. Certainly, fears of these outcomes can make us hold back from talking about important but potentially upsetting topics.
Of course, courage does not just mean being direct with questions, stating your observations, or giving advice. Courage requires thoughtfulness about possible adverse outcomes and their effect on others. It is not just “stupid bravery,” to proceed even when sensing danger. Courage is thus best paired with skill. It is:
- Setting up potentially difficult discussions with privacy (from the child or parent), seating, and enough time to listen.
- Normalizing questions by saying “I ask all my patients about ...” so patients do not feel singled out.
- Asking the patient or family first what they think is going on and how their own culture might regard the issue.
- Using simple language and arranging a translator when needed.
- Not just stating facts but checking “to be sure I explained well enough” rather than setting a patient up to appear ignorant for not understanding.
- Offering to contact the patient or other family member/support soon to review what you said and answer more questions.
- Offering a second opinion option.
- Promising to get more information when you do not know.
- Always leaving room for hope and sharing in that hope with them.
And it is crucial to have a way to keep notes about past trauma or difficult topics for a patient so neither you nor subsequent clinicians unnecessarily ask about sensitive topics.
Courage includes facing difficult situations without undue delay. Making that call about an abnormal test result right away, even when you are tired and upset, takes courage. Each time you overcome your own reluctance it takes moral strength but tends to make future courageous acts easier. Speaking up to a specialist on rounds when you think he or she is incorrect takes courage to serve the patient’s best interest. Being willing to try a new workflow in your office takes the courage to risk looking awkward or being judged by your team, but can be essential to progress. Asking for help or an opinion, sometimes from a medical assistant or student, can take courage but may reduce status barriers and improve relationships. Standing up for your values when they are not popular may take courage in some organizations. It takes courage to admit a mistake, even when your mistake may not otherwise be noticed.
How can we grow in courage? T. Berry Brazelton, MD, was a model of courage for me during my training – able and willing to tell about a child’s delays or ask about a parent’s well-being with empathy and by giving hope. Dr. Brazelton, pediatrician, developer of the Neonatal Behavioral Assessment Scale, professor at Harvard Medical School and founder of its Child Development Unit, was a world-renowned educator about the development of children and founder of the Touchpoints program. Our goal should be to promise to partner with the family in dealing with the problem, no matter how difficult or tender. I hope you had role models who not only said what to do but also demonstrated it with patients.
We had the privilege of hearing stories of difficult situations from hundreds of pediatricians in group sessions over the years in the Collaborative Office Rounds program. What group members often said that they valued most from these sessions was hearing examples of words they might say in these cases, either modeled by the coleaders or suggested by their pediatrician peers. Opportunities to share the tough times with trusted empathic peers is an important resource rarer and thus even more worth securing for yourself.
Being courageous may not be natural part of your personality but Aristotle said, “We become what we repeatedly do.” Even if you do not consider yourself so now, with practice you can become courageous and reap its benefits for your patients and yourself.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
I have been noticing “jokes” lately about doctors. Magazine cartoons depict doctors as conveying a bad prognosis in abrupt, indirect, vague ways. I remember, from medical school, the joke about pediatricians being doctors for patients “from the waist up” – wimps about tough topics such as sexuality. As an inherently shy person, I have appreciated the structure of the contractual relationship with families that both gives me permission and requires me to be direct about topics that would not be socially acceptable to discuss in other relationships.
Examples include our asking about bowel movements, genital symptoms, marital conflict, past abortions, food insecurity, adherence to medication, history of trauma or discrimination, substance use, illegal conduct, and suicidal ideation, among others. By bringing up these topics nonjudgmentally and with skill, we are demonstrating openness and making it safe for the patient/parent to ask questions about their own concerns.
Since these may be topics for which we lack knowledge or have very little power to help, it is far easier to not bring them up. Yet failing to have the courage to elicit sensitive information may delay the correct diagnosis, result in inappropriate tests or treatments, or miss factors critical in either the cause or solution for the patient’s problems.
Historically, being a physician has conveyed a promise of confidentiality and always trying to do what is best for the patient. The fact that we had to swear an oath to do so may also indicate that these things are not easy to do.
Yes, we need a lot of knowledge to know what is truly in the patient’s best interest. But we need to take personal risks to do it as well. There have been times when a parent has shouted “That is none of your business” at me or stormed out. Although only one patient has ever connected when striking out at me, other clinicians have not been as lucky (or had such small patients); some have even been killed.
For those of us in private practice, upsetting a patient with our well-intentioned words may mean losing them from our income stream or having them post negative comments online, which may affect our reputation in the community. Patients may not return for needed follow-up if a conversation was too uncomfortable for them. Current political divisions make this even trickier.
These days anxiety about getting behind in seeing the next patient may be a covert reason for avoiding difficult conversations as tears or anger take extra time. Certainly, fears of these outcomes can make us hold back from talking about important but potentially upsetting topics.
Of course, courage does not just mean being direct with questions, stating your observations, or giving advice. Courage requires thoughtfulness about possible adverse outcomes and their effect on others. It is not just “stupid bravery,” to proceed even when sensing danger. Courage is thus best paired with skill. It is:
- Setting up potentially difficult discussions with privacy (from the child or parent), seating, and enough time to listen.
- Normalizing questions by saying “I ask all my patients about ...” so patients do not feel singled out.
- Asking the patient or family first what they think is going on and how their own culture might regard the issue.
- Using simple language and arranging a translator when needed.
- Not just stating facts but checking “to be sure I explained well enough” rather than setting a patient up to appear ignorant for not understanding.
- Offering to contact the patient or other family member/support soon to review what you said and answer more questions.
- Offering a second opinion option.
- Promising to get more information when you do not know.
- Always leaving room for hope and sharing in that hope with them.
And it is crucial to have a way to keep notes about past trauma or difficult topics for a patient so neither you nor subsequent clinicians unnecessarily ask about sensitive topics.
Courage includes facing difficult situations without undue delay. Making that call about an abnormal test result right away, even when you are tired and upset, takes courage. Each time you overcome your own reluctance it takes moral strength but tends to make future courageous acts easier. Speaking up to a specialist on rounds when you think he or she is incorrect takes courage to serve the patient’s best interest. Being willing to try a new workflow in your office takes the courage to risk looking awkward or being judged by your team, but can be essential to progress. Asking for help or an opinion, sometimes from a medical assistant or student, can take courage but may reduce status barriers and improve relationships. Standing up for your values when they are not popular may take courage in some organizations. It takes courage to admit a mistake, even when your mistake may not otherwise be noticed.
How can we grow in courage? T. Berry Brazelton, MD, was a model of courage for me during my training – able and willing to tell about a child’s delays or ask about a parent’s well-being with empathy and by giving hope. Dr. Brazelton, pediatrician, developer of the Neonatal Behavioral Assessment Scale, professor at Harvard Medical School and founder of its Child Development Unit, was a world-renowned educator about the development of children and founder of the Touchpoints program. Our goal should be to promise to partner with the family in dealing with the problem, no matter how difficult or tender. I hope you had role models who not only said what to do but also demonstrated it with patients.
We had the privilege of hearing stories of difficult situations from hundreds of pediatricians in group sessions over the years in the Collaborative Office Rounds program. What group members often said that they valued most from these sessions was hearing examples of words they might say in these cases, either modeled by the coleaders or suggested by their pediatrician peers. Opportunities to share the tough times with trusted empathic peers is an important resource rarer and thus even more worth securing for yourself.
Being courageous may not be natural part of your personality but Aristotle said, “We become what we repeatedly do.” Even if you do not consider yourself so now, with practice you can become courageous and reap its benefits for your patients and yourself.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
First weeks back to school: An uneasy transition
Parents are relieved when school starts up again in the fall. Kids also are eager to see their friends and go on to the next level of learning.
Or are they?
This year brings a greater mix of feelings than usual for many families.
Many parents and children have new worries: Are children going to be safe at school from COVID, bullies, and shooters? Are they going to be ready to learn at this next level after the intermittent schooling of the past 2+ pandemic years of Zoom school, home school, or no school? Are they going to be able to separate after months of closeness/entanglement? Are they going to be able to catch up academically and fit in socially?
Children may have additional worries about how they have changed over the pandemic. Will my former friends still accept me now that I am heavier, showing puberty, experiencing acne, or feeling depressed or anxious?
While most of these worries occurred in some form after other summer breaks, they may be exacerbated by the length and degree of uncertainty we have all been through.
Often, health supervision visits are happy reunions with our patients when we hear about their growth and goals. We hope that is true this year, too, but we need to be vigilant and open to discussing the worries just mentioned.
What can we do to help ease this magnified transition?
First, we need to be open to their worries. Echoing back their concerns and noting how they are understandable and common can be reassuring when families have been isolated and missing interactions that might have made this clear. Second, we can remind them of the steps that assist in any transition. Now more than ever they need to collect information by visiting the new classroom, meeting teachers, and attending open house meet-and-greets. Older students may do better by looking over textbooks or a syllabus to see what will be covered. Making an effort to meet kids and families new to the school is a kind gesture but also helps the experienced child take some initiative and feel more confident.
Setting up an organizational system for homework from the start is valuable as work gets harder and is especially important for kids with ADHD. Single-subject folders, an assignment book tracking short-term and long-term projects, a plan for a specific homework time and place, a bookbag checklist by the door, or even a homework buddy and duplicate textbooks may be needed. Any kind of active steps toward organization can reduce anxiety.
Third, adjusting to the new schedule can take time. The most important adjustment is resetting the child’s sleep-wake cycle. You can recommend a move of 1 hour per day closer to the required wake up time and a corresponding bedtime that affords at least 8 hours (for tweens and teens; 9-12 hours for younger children), then maintaining the sleep schedule within 1 hour 7 days per week. Keep phones and tablets out of the bedroom. If children over 4 (including teens) have been napping over the summer, this needs to stop. Shifting mealtimes to fit the new schedule helps. Ensuring that lights are dimmed in the evening and bright in the morning has been shown to help the brain adjust.
A “new school year” is a good time for families to set new goals. Summer is often a time of fun, freedom, and new things. Parents may need your encouragement to exert leadership after months of cutting slack for their kids during COVID. Setting new goals such as greater responsibilities, music lessons, or household rules can be balanced by higher allowance and new earned privileges. Planning things to look forward to in the new year can be a family activity with a pleasant tone rather than just evoking protest. Suggest involving everyone in brainstorming crazy, out-of-the-box ideas (large and small) without censorship at first – for instance, go on a Mars mission; have pizza for breakfast; get yoga lessons; borrow binoculars to see Saturn; have a dog party! Everyone should be heard and their creativity celebrated. The list can then be narrowed down and marked on a calendar, starting soon.
Wait, you are hearing, how do we get our child off media to achieve this? Changing the rules about media use is never easy, and more now than ever. It is not just that kids are addicted to media, but it has been their main connection to peers during the pandemic. The “information” about/from peers, cliques, bullies, and world news may also be contributing to anxiety about returning to school. They may feel that they “need to know” even though it is upsetting. You can help kids verbalize the pros and cons of media use and possible addiction for themselves. How important media is to them needs to be acknowledged but ownership of the device and the final rules about this life-altering exposure must belong to the parents.
Sharing the AAP Family Media Plan to set proportions of time for school, homework, exercise, media (less than 2 hours for nonhomework), fun, and sleep can set an objective structure for the conversation. Parents may need to change their own media habits too!
While we pediatricians may normalize worries to reassure patients and parents, we also need to be alert to children and families in need of help. Many children have developed significant anxiety, depression, or substance use during the pandemic while out of our oversight but may not bring it up. Bereavement, which affected so many families during the pandemic, may not resolve smoothly. Families may have lost support, jobs, housing, or health insurance and need help connecting with assistance. Use of screening tools can ensure these are not missed, while remembering that functional impairment (social, academic, daily living, distress) is what differentiates normal from abnormal. We may be able to counsel them ourselves or refer them.
All this may be happening for you and your family, too. It can be difficult to assist others when we are struggling ourselves. We have been called on to cope when everything has been uncertain and our patients are sad, angry, or distrustful, with no end to the stress in sight. Sharing with colleagues, taking a break, or getting help for yourself may need to be a new goal for the school year, too.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Parents are relieved when school starts up again in the fall. Kids also are eager to see their friends and go on to the next level of learning.
Or are they?
This year brings a greater mix of feelings than usual for many families.
Many parents and children have new worries: Are children going to be safe at school from COVID, bullies, and shooters? Are they going to be ready to learn at this next level after the intermittent schooling of the past 2+ pandemic years of Zoom school, home school, or no school? Are they going to be able to separate after months of closeness/entanglement? Are they going to be able to catch up academically and fit in socially?
Children may have additional worries about how they have changed over the pandemic. Will my former friends still accept me now that I am heavier, showing puberty, experiencing acne, or feeling depressed or anxious?
While most of these worries occurred in some form after other summer breaks, they may be exacerbated by the length and degree of uncertainty we have all been through.
Often, health supervision visits are happy reunions with our patients when we hear about their growth and goals. We hope that is true this year, too, but we need to be vigilant and open to discussing the worries just mentioned.
What can we do to help ease this magnified transition?
First, we need to be open to their worries. Echoing back their concerns and noting how they are understandable and common can be reassuring when families have been isolated and missing interactions that might have made this clear. Second, we can remind them of the steps that assist in any transition. Now more than ever they need to collect information by visiting the new classroom, meeting teachers, and attending open house meet-and-greets. Older students may do better by looking over textbooks or a syllabus to see what will be covered. Making an effort to meet kids and families new to the school is a kind gesture but also helps the experienced child take some initiative and feel more confident.
Setting up an organizational system for homework from the start is valuable as work gets harder and is especially important for kids with ADHD. Single-subject folders, an assignment book tracking short-term and long-term projects, a plan for a specific homework time and place, a bookbag checklist by the door, or even a homework buddy and duplicate textbooks may be needed. Any kind of active steps toward organization can reduce anxiety.
Third, adjusting to the new schedule can take time. The most important adjustment is resetting the child’s sleep-wake cycle. You can recommend a move of 1 hour per day closer to the required wake up time and a corresponding bedtime that affords at least 8 hours (for tweens and teens; 9-12 hours for younger children), then maintaining the sleep schedule within 1 hour 7 days per week. Keep phones and tablets out of the bedroom. If children over 4 (including teens) have been napping over the summer, this needs to stop. Shifting mealtimes to fit the new schedule helps. Ensuring that lights are dimmed in the evening and bright in the morning has been shown to help the brain adjust.
A “new school year” is a good time for families to set new goals. Summer is often a time of fun, freedom, and new things. Parents may need your encouragement to exert leadership after months of cutting slack for their kids during COVID. Setting new goals such as greater responsibilities, music lessons, or household rules can be balanced by higher allowance and new earned privileges. Planning things to look forward to in the new year can be a family activity with a pleasant tone rather than just evoking protest. Suggest involving everyone in brainstorming crazy, out-of-the-box ideas (large and small) without censorship at first – for instance, go on a Mars mission; have pizza for breakfast; get yoga lessons; borrow binoculars to see Saturn; have a dog party! Everyone should be heard and their creativity celebrated. The list can then be narrowed down and marked on a calendar, starting soon.
Wait, you are hearing, how do we get our child off media to achieve this? Changing the rules about media use is never easy, and more now than ever. It is not just that kids are addicted to media, but it has been their main connection to peers during the pandemic. The “information” about/from peers, cliques, bullies, and world news may also be contributing to anxiety about returning to school. They may feel that they “need to know” even though it is upsetting. You can help kids verbalize the pros and cons of media use and possible addiction for themselves. How important media is to them needs to be acknowledged but ownership of the device and the final rules about this life-altering exposure must belong to the parents.
Sharing the AAP Family Media Plan to set proportions of time for school, homework, exercise, media (less than 2 hours for nonhomework), fun, and sleep can set an objective structure for the conversation. Parents may need to change their own media habits too!
While we pediatricians may normalize worries to reassure patients and parents, we also need to be alert to children and families in need of help. Many children have developed significant anxiety, depression, or substance use during the pandemic while out of our oversight but may not bring it up. Bereavement, which affected so many families during the pandemic, may not resolve smoothly. Families may have lost support, jobs, housing, or health insurance and need help connecting with assistance. Use of screening tools can ensure these are not missed, while remembering that functional impairment (social, academic, daily living, distress) is what differentiates normal from abnormal. We may be able to counsel them ourselves or refer them.
All this may be happening for you and your family, too. It can be difficult to assist others when we are struggling ourselves. We have been called on to cope when everything has been uncertain and our patients are sad, angry, or distrustful, with no end to the stress in sight. Sharing with colleagues, taking a break, or getting help for yourself may need to be a new goal for the school year, too.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Parents are relieved when school starts up again in the fall. Kids also are eager to see their friends and go on to the next level of learning.
Or are they?
This year brings a greater mix of feelings than usual for many families.
Many parents and children have new worries: Are children going to be safe at school from COVID, bullies, and shooters? Are they going to be ready to learn at this next level after the intermittent schooling of the past 2+ pandemic years of Zoom school, home school, or no school? Are they going to be able to separate after months of closeness/entanglement? Are they going to be able to catch up academically and fit in socially?
Children may have additional worries about how they have changed over the pandemic. Will my former friends still accept me now that I am heavier, showing puberty, experiencing acne, or feeling depressed or anxious?
While most of these worries occurred in some form after other summer breaks, they may be exacerbated by the length and degree of uncertainty we have all been through.
Often, health supervision visits are happy reunions with our patients when we hear about their growth and goals. We hope that is true this year, too, but we need to be vigilant and open to discussing the worries just mentioned.
What can we do to help ease this magnified transition?
First, we need to be open to their worries. Echoing back their concerns and noting how they are understandable and common can be reassuring when families have been isolated and missing interactions that might have made this clear. Second, we can remind them of the steps that assist in any transition. Now more than ever they need to collect information by visiting the new classroom, meeting teachers, and attending open house meet-and-greets. Older students may do better by looking over textbooks or a syllabus to see what will be covered. Making an effort to meet kids and families new to the school is a kind gesture but also helps the experienced child take some initiative and feel more confident.
Setting up an organizational system for homework from the start is valuable as work gets harder and is especially important for kids with ADHD. Single-subject folders, an assignment book tracking short-term and long-term projects, a plan for a specific homework time and place, a bookbag checklist by the door, or even a homework buddy and duplicate textbooks may be needed. Any kind of active steps toward organization can reduce anxiety.
Third, adjusting to the new schedule can take time. The most important adjustment is resetting the child’s sleep-wake cycle. You can recommend a move of 1 hour per day closer to the required wake up time and a corresponding bedtime that affords at least 8 hours (for tweens and teens; 9-12 hours for younger children), then maintaining the sleep schedule within 1 hour 7 days per week. Keep phones and tablets out of the bedroom. If children over 4 (including teens) have been napping over the summer, this needs to stop. Shifting mealtimes to fit the new schedule helps. Ensuring that lights are dimmed in the evening and bright in the morning has been shown to help the brain adjust.
A “new school year” is a good time for families to set new goals. Summer is often a time of fun, freedom, and new things. Parents may need your encouragement to exert leadership after months of cutting slack for their kids during COVID. Setting new goals such as greater responsibilities, music lessons, or household rules can be balanced by higher allowance and new earned privileges. Planning things to look forward to in the new year can be a family activity with a pleasant tone rather than just evoking protest. Suggest involving everyone in brainstorming crazy, out-of-the-box ideas (large and small) without censorship at first – for instance, go on a Mars mission; have pizza for breakfast; get yoga lessons; borrow binoculars to see Saturn; have a dog party! Everyone should be heard and their creativity celebrated. The list can then be narrowed down and marked on a calendar, starting soon.
Wait, you are hearing, how do we get our child off media to achieve this? Changing the rules about media use is never easy, and more now than ever. It is not just that kids are addicted to media, but it has been their main connection to peers during the pandemic. The “information” about/from peers, cliques, bullies, and world news may also be contributing to anxiety about returning to school. They may feel that they “need to know” even though it is upsetting. You can help kids verbalize the pros and cons of media use and possible addiction for themselves. How important media is to them needs to be acknowledged but ownership of the device and the final rules about this life-altering exposure must belong to the parents.
Sharing the AAP Family Media Plan to set proportions of time for school, homework, exercise, media (less than 2 hours for nonhomework), fun, and sleep can set an objective structure for the conversation. Parents may need to change their own media habits too!
While we pediatricians may normalize worries to reassure patients and parents, we also need to be alert to children and families in need of help. Many children have developed significant anxiety, depression, or substance use during the pandemic while out of our oversight but may not bring it up. Bereavement, which affected so many families during the pandemic, may not resolve smoothly. Families may have lost support, jobs, housing, or health insurance and need help connecting with assistance. Use of screening tools can ensure these are not missed, while remembering that functional impairment (social, academic, daily living, distress) is what differentiates normal from abnormal. We may be able to counsel them ourselves or refer them.
All this may be happening for you and your family, too. It can be difficult to assist others when we are struggling ourselves. We have been called on to cope when everything has been uncertain and our patients are sad, angry, or distrustful, with no end to the stress in sight. Sharing with colleagues, taking a break, or getting help for yourself may need to be a new goal for the school year, too.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Why do young men target schools for violent attacks? And what can we do about it?
Schools are intended to be a safe place to acquire knowledge, try out ideas, practice socializing, and build a foundation for adulthood. Many schools fulfill this mission for most children, but for children at both extremes of ability their school experience does not suffice.
When asked, “If you had the choice, would you rather stay home or go to school?” my patients almost universally prefer school. They all know that school is where they should be; they want to be normal, accepted by peers, getting ready for the world’s coming demands, and validation that they will make it as adults. Endorsement otherwise is a warning sign.
When such important tasks of childhood are thwarted children may despair, withdraw, give up, or a small number become furious. These may profoundly resent the children who are experiencing success when they could not. They may hate the teachers and the place where they experienced failure and humiliation. Lack of a positive connection to school characterizes children who are violent toward schools as well as those who drop out.
Schools may fail to support the basic needs of children for many reasons. Schools may avoid physical violence but fail to protect the children’s self-esteem. I have heard stories of teachers calling on children to perform who are clearly struggling or shy, insulting incorrect answers, calling names, putting names on the board, reading out failed grades, posting grades publicly, even allowing peers to mock students. Teachers may deny or disregard parent complaints, or even worsen treatment of the child. Although children may at times falsify complaints, children’s and parents’ reports must be taken seriously and remain anonymous. When we hear of such toxic situations for our patients, we can get details and contact school administrators without naming the child, as often the family feels they can’t. Repeated humiliation may require not only remediation, but consequences. We can advocate for a change in classroom or request a 504 Plan if emotional health is affected.
All children learn best and experience success and even joy when the tasks they face are at or slightly beyond their skill level. But with the wide range of abilities, especially for boys, education may need to be individualized. This is very difficult in larger classrooms with fewer resources, too few adult helpers, inexperienced teachers, or high levels of student misbehavior. Basing teacher promotion mainly on standardized test results makes individualizing instruction even less likely. Smaller class size is better; even the recommended (less than 20) or regulated (less than 30) class sizes are associated with suboptimal achievement, compared with smaller ones. Some ways to attain smaller class size include split days or alternate-day sessions, although these also have disadvantages.
While we can advocate for these changes, we can also encourage parents to promote academic skills by talking to and reading to their children of all ages, trying Reach Out and Read for young children, providing counting games, board games, and math songs! Besides screening for attention-deficit/hyperactivity disorder, we can use standard paragraphs and math problems (for example, WRAT, Einstein) to check skills when performance is low or behavior is a problem the school denies. When concerned, we can write letters for parents to sign requesting testing and an individualized education plan to determine need for tutoring or special education.
While Federal legislation requiring the “least restrictive environment” for education was intended to avoid sidelining differently able children, some can’t learn in a regular class. Conversely, if instruction in a special class is adjusted to the child with the lowest skills, minimal learning may occur for others. Although we can speak with the teacher about “this child’s abilities among those in his class” we can first suggest that the parent visit class to observe. Outside tutoring or home schooling may help a child move up to a regular class.
Sometimes a child’s learning is hampered by classrooms with numerous children misbehaving; this is also a reason for resentment. We can inform school administrators about methods such as The Good Behavior Game (paxis.org) that can improve behavior and connection for the whole class.
While a social “pecking order” is universal, it is unacceptable for children to be allowed to humiliate or hurt a peer, or damage their reputation. While this moral teaching should occur at home, it needs to continue at school where peers are forced into groups they did not choose. Screening for bullying at pediatric visits is now a universal recommendation as 30% report being bullied. We need to ask all children about “mean kids in school” or gang involvement for older children.
Parents can support their children experiencing cyberbullying and switch them to a “dumb phone” with no texting option, limited phone time, or no phone at all. Policies against bullying coming from school administrators are most effective but we can inform schools about the STOPit app for children to report bullying anonymously as well as education for students to stand together against a bully (stopbullying.gov). A Lunch Bunch for younger children or a buddy system for older ones can be requested to help them make friends.
With diverse child aptitudes, schools need to offer students alternative opportunities for self-expression and contribution. We can ask about a child’s strengths and suggest related extracurriculars activities in school or outside, including volunteering. Participation on teams or in clubs must not be blocked for those with poor grades. Perhaps tying participation to tutoring would satisfy the school’s desire to motivate instead. Parents can be encouraged to advocate for music, art, and drama classes – programs that are often victims of budget cuts – that can create the essential school connection.
Students in many areas lack access to classes in trades early enough in their education. The requirements for English or math may be out of reach and result in students dropping out before trade classes are an option. We may identify our patients who may do better with a trade education and advise families to request transfer to a high school offering this.
The best connection a child can have to a school is an adult who values them. The child may identify a preferred teacher to us so that we, or the parent, can call to ask them to provide special attention. Facilitating times for students to get to know teachers may require alteration in bus schedules, lunch times, study halls, or breaks, or keeping the school open longer outside class hours. While more mental health providers are clearly needed, sometimes it is the groundskeeper, the secretary, or the lunch helper who can make the best connection with a child.
As pediatricians, we must listen to struggling youth, acknowledge their pain, and model this empathy for their parents who may be obsessing over grades. Problem-solving about how to get accommodations, informal or formal, can inspire hope. We can coach parents and youth to meet respectfully with the school about issues to avoid labeling the child as a problem.
As pediatricians, our recommendations for school funding and policies may carry extra weight. We may share ideas through talks at PTA meetings, serve on school boards, or endorse leaders planning greater resources for schools to optimize each child’s experience and connection to school.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Schools are intended to be a safe place to acquire knowledge, try out ideas, practice socializing, and build a foundation for adulthood. Many schools fulfill this mission for most children, but for children at both extremes of ability their school experience does not suffice.
When asked, “If you had the choice, would you rather stay home or go to school?” my patients almost universally prefer school. They all know that school is where they should be; they want to be normal, accepted by peers, getting ready for the world’s coming demands, and validation that they will make it as adults. Endorsement otherwise is a warning sign.
When such important tasks of childhood are thwarted children may despair, withdraw, give up, or a small number become furious. These may profoundly resent the children who are experiencing success when they could not. They may hate the teachers and the place where they experienced failure and humiliation. Lack of a positive connection to school characterizes children who are violent toward schools as well as those who drop out.
Schools may fail to support the basic needs of children for many reasons. Schools may avoid physical violence but fail to protect the children’s self-esteem. I have heard stories of teachers calling on children to perform who are clearly struggling or shy, insulting incorrect answers, calling names, putting names on the board, reading out failed grades, posting grades publicly, even allowing peers to mock students. Teachers may deny or disregard parent complaints, or even worsen treatment of the child. Although children may at times falsify complaints, children’s and parents’ reports must be taken seriously and remain anonymous. When we hear of such toxic situations for our patients, we can get details and contact school administrators without naming the child, as often the family feels they can’t. Repeated humiliation may require not only remediation, but consequences. We can advocate for a change in classroom or request a 504 Plan if emotional health is affected.
All children learn best and experience success and even joy when the tasks they face are at or slightly beyond their skill level. But with the wide range of abilities, especially for boys, education may need to be individualized. This is very difficult in larger classrooms with fewer resources, too few adult helpers, inexperienced teachers, or high levels of student misbehavior. Basing teacher promotion mainly on standardized test results makes individualizing instruction even less likely. Smaller class size is better; even the recommended (less than 20) or regulated (less than 30) class sizes are associated with suboptimal achievement, compared with smaller ones. Some ways to attain smaller class size include split days or alternate-day sessions, although these also have disadvantages.
While we can advocate for these changes, we can also encourage parents to promote academic skills by talking to and reading to their children of all ages, trying Reach Out and Read for young children, providing counting games, board games, and math songs! Besides screening for attention-deficit/hyperactivity disorder, we can use standard paragraphs and math problems (for example, WRAT, Einstein) to check skills when performance is low or behavior is a problem the school denies. When concerned, we can write letters for parents to sign requesting testing and an individualized education plan to determine need for tutoring or special education.
While Federal legislation requiring the “least restrictive environment” for education was intended to avoid sidelining differently able children, some can’t learn in a regular class. Conversely, if instruction in a special class is adjusted to the child with the lowest skills, minimal learning may occur for others. Although we can speak with the teacher about “this child’s abilities among those in his class” we can first suggest that the parent visit class to observe. Outside tutoring or home schooling may help a child move up to a regular class.
Sometimes a child’s learning is hampered by classrooms with numerous children misbehaving; this is also a reason for resentment. We can inform school administrators about methods such as The Good Behavior Game (paxis.org) that can improve behavior and connection for the whole class.
While a social “pecking order” is universal, it is unacceptable for children to be allowed to humiliate or hurt a peer, or damage their reputation. While this moral teaching should occur at home, it needs to continue at school where peers are forced into groups they did not choose. Screening for bullying at pediatric visits is now a universal recommendation as 30% report being bullied. We need to ask all children about “mean kids in school” or gang involvement for older children.
Parents can support their children experiencing cyberbullying and switch them to a “dumb phone” with no texting option, limited phone time, or no phone at all. Policies against bullying coming from school administrators are most effective but we can inform schools about the STOPit app for children to report bullying anonymously as well as education for students to stand together against a bully (stopbullying.gov). A Lunch Bunch for younger children or a buddy system for older ones can be requested to help them make friends.
With diverse child aptitudes, schools need to offer students alternative opportunities for self-expression and contribution. We can ask about a child’s strengths and suggest related extracurriculars activities in school or outside, including volunteering. Participation on teams or in clubs must not be blocked for those with poor grades. Perhaps tying participation to tutoring would satisfy the school’s desire to motivate instead. Parents can be encouraged to advocate for music, art, and drama classes – programs that are often victims of budget cuts – that can create the essential school connection.
Students in many areas lack access to classes in trades early enough in their education. The requirements for English or math may be out of reach and result in students dropping out before trade classes are an option. We may identify our patients who may do better with a trade education and advise families to request transfer to a high school offering this.
The best connection a child can have to a school is an adult who values them. The child may identify a preferred teacher to us so that we, or the parent, can call to ask them to provide special attention. Facilitating times for students to get to know teachers may require alteration in bus schedules, lunch times, study halls, or breaks, or keeping the school open longer outside class hours. While more mental health providers are clearly needed, sometimes it is the groundskeeper, the secretary, or the lunch helper who can make the best connection with a child.
As pediatricians, we must listen to struggling youth, acknowledge their pain, and model this empathy for their parents who may be obsessing over grades. Problem-solving about how to get accommodations, informal or formal, can inspire hope. We can coach parents and youth to meet respectfully with the school about issues to avoid labeling the child as a problem.
As pediatricians, our recommendations for school funding and policies may carry extra weight. We may share ideas through talks at PTA meetings, serve on school boards, or endorse leaders planning greater resources for schools to optimize each child’s experience and connection to school.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Schools are intended to be a safe place to acquire knowledge, try out ideas, practice socializing, and build a foundation for adulthood. Many schools fulfill this mission for most children, but for children at both extremes of ability their school experience does not suffice.
When asked, “If you had the choice, would you rather stay home or go to school?” my patients almost universally prefer school. They all know that school is where they should be; they want to be normal, accepted by peers, getting ready for the world’s coming demands, and validation that they will make it as adults. Endorsement otherwise is a warning sign.
When such important tasks of childhood are thwarted children may despair, withdraw, give up, or a small number become furious. These may profoundly resent the children who are experiencing success when they could not. They may hate the teachers and the place where they experienced failure and humiliation. Lack of a positive connection to school characterizes children who are violent toward schools as well as those who drop out.
Schools may fail to support the basic needs of children for many reasons. Schools may avoid physical violence but fail to protect the children’s self-esteem. I have heard stories of teachers calling on children to perform who are clearly struggling or shy, insulting incorrect answers, calling names, putting names on the board, reading out failed grades, posting grades publicly, even allowing peers to mock students. Teachers may deny or disregard parent complaints, or even worsen treatment of the child. Although children may at times falsify complaints, children’s and parents’ reports must be taken seriously and remain anonymous. When we hear of such toxic situations for our patients, we can get details and contact school administrators without naming the child, as often the family feels they can’t. Repeated humiliation may require not only remediation, but consequences. We can advocate for a change in classroom or request a 504 Plan if emotional health is affected.
All children learn best and experience success and even joy when the tasks they face are at or slightly beyond their skill level. But with the wide range of abilities, especially for boys, education may need to be individualized. This is very difficult in larger classrooms with fewer resources, too few adult helpers, inexperienced teachers, or high levels of student misbehavior. Basing teacher promotion mainly on standardized test results makes individualizing instruction even less likely. Smaller class size is better; even the recommended (less than 20) or regulated (less than 30) class sizes are associated with suboptimal achievement, compared with smaller ones. Some ways to attain smaller class size include split days or alternate-day sessions, although these also have disadvantages.
While we can advocate for these changes, we can also encourage parents to promote academic skills by talking to and reading to their children of all ages, trying Reach Out and Read for young children, providing counting games, board games, and math songs! Besides screening for attention-deficit/hyperactivity disorder, we can use standard paragraphs and math problems (for example, WRAT, Einstein) to check skills when performance is low or behavior is a problem the school denies. When concerned, we can write letters for parents to sign requesting testing and an individualized education plan to determine need for tutoring or special education.
While Federal legislation requiring the “least restrictive environment” for education was intended to avoid sidelining differently able children, some can’t learn in a regular class. Conversely, if instruction in a special class is adjusted to the child with the lowest skills, minimal learning may occur for others. Although we can speak with the teacher about “this child’s abilities among those in his class” we can first suggest that the parent visit class to observe. Outside tutoring or home schooling may help a child move up to a regular class.
Sometimes a child’s learning is hampered by classrooms with numerous children misbehaving; this is also a reason for resentment. We can inform school administrators about methods such as The Good Behavior Game (paxis.org) that can improve behavior and connection for the whole class.
While a social “pecking order” is universal, it is unacceptable for children to be allowed to humiliate or hurt a peer, or damage their reputation. While this moral teaching should occur at home, it needs to continue at school where peers are forced into groups they did not choose. Screening for bullying at pediatric visits is now a universal recommendation as 30% report being bullied. We need to ask all children about “mean kids in school” or gang involvement for older children.
Parents can support their children experiencing cyberbullying and switch them to a “dumb phone” with no texting option, limited phone time, or no phone at all. Policies against bullying coming from school administrators are most effective but we can inform schools about the STOPit app for children to report bullying anonymously as well as education for students to stand together against a bully (stopbullying.gov). A Lunch Bunch for younger children or a buddy system for older ones can be requested to help them make friends.
With diverse child aptitudes, schools need to offer students alternative opportunities for self-expression and contribution. We can ask about a child’s strengths and suggest related extracurriculars activities in school or outside, including volunteering. Participation on teams or in clubs must not be blocked for those with poor grades. Perhaps tying participation to tutoring would satisfy the school’s desire to motivate instead. Parents can be encouraged to advocate for music, art, and drama classes – programs that are often victims of budget cuts – that can create the essential school connection.
Students in many areas lack access to classes in trades early enough in their education. The requirements for English or math may be out of reach and result in students dropping out before trade classes are an option. We may identify our patients who may do better with a trade education and advise families to request transfer to a high school offering this.
The best connection a child can have to a school is an adult who values them. The child may identify a preferred teacher to us so that we, or the parent, can call to ask them to provide special attention. Facilitating times for students to get to know teachers may require alteration in bus schedules, lunch times, study halls, or breaks, or keeping the school open longer outside class hours. While more mental health providers are clearly needed, sometimes it is the groundskeeper, the secretary, or the lunch helper who can make the best connection with a child.
As pediatricians, we must listen to struggling youth, acknowledge their pain, and model this empathy for their parents who may be obsessing over grades. Problem-solving about how to get accommodations, informal or formal, can inspire hope. We can coach parents and youth to meet respectfully with the school about issues to avoid labeling the child as a problem.
As pediatricians, our recommendations for school funding and policies may carry extra weight. We may share ideas through talks at PTA meetings, serve on school boards, or endorse leaders planning greater resources for schools to optimize each child’s experience and connection to school.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
What can be new about developmental milestones?
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
Did you know these things about nicotine? Your patients don’t
When asked, young people report that their reasons for starting smoking include rebellion, a new thing to try, and a peer social activity, among others. While you recognize these as developmentally expected drives, it is frustrating and scary that youth don’t realize how their brains are especially sensitive to permanent changes from nicotine.
Smoking even five packs of cigarettes is enough to cause addiction in youth; an influence as powerful as for cocaine or heroin. One pod of a vaping device delivers as much nicotine as one to five packs of cigarettes, depending on the strength and brand. There are no standards for this content and youth often are unaware of any nicotine and chemicals in vapes. Over 90% of adult smokers started before age 18, some as young as 6, mainly because quitting is so difficult. Cigarettes and vaping are not the only sources of nicotine used by youth; others are oral tobacco (chewing tobacco and dip), cigars, pipes, snus (between cheek and gum), hookahs, electronic devices, bidis (tobacco in a tendu leaf), kreteks (tobacco with cloves), and dissolvable tobacco products. Many youth use both cigarettes and noncigarette tobacco.
Given these predispositions, short-term COVID-19 and asthma exacerbation, and the long-lasting detriment of smoking on neurological, cardiac, pulmonary, and emotional health, actually the “leading preventable cause of death,” our job as pediatric providers is to do our best to prevent smoking/vaping or help our patients quit. But adolescent development is notoriously characterized by short-term thinking and feeling immune from long-term health consequences. So what approach has the best results? Focus on aspects of smoking important to the youth now, such as sports performance, bad breath, social stigma, insomnia, cost, lack of benefit for weight loss, and hazardous waste produced. Add to that loss of independence and being manipulated by Big Business by getting them (and targeted minorities) hooked may be salient in our discussion.
Even a brief 3-minute discussion using the AAC (Ask/Assess, Advise, Connect) format has shown effectiveness in getting teens and adults to quit smoking. Our assessment needs to include asking the extent of current use and symptoms of dependence to inform the treatment plan. We need to use their trust in us to advise that quitting is the best thing they can do for their health.
If the youth’s readiness stage is “thinking about stopping” nicotine, our motivational interview–style discussion of pros and cons could include asking “How important is it to you to stop?” and “What are some things that would help you?” If they are open to trying to stop, advise them to set a quit date within 2 weeks and suggest reducing gradually before then (and schedule follow-up). The plan needs to include dealing with the inevitable urges by finding ways to avoid current triggers to smoke (e.g., certain school bathrooms, people drinking or smoking, or stress over homework, conflict at home, etc.). Encourage exercise and meditation to distract and deal with the anxiety; asking family to quit; having a snack handy (such as sugarless gum or sunflower seeds) for when oral cravings develop; and setting rewards for early days of smoke-free success. We need to inform youth that using e-cigs actually reduces rates of success in quitting.
We need to warn youth of the withdrawal symptoms and their usual course when quitting: cravings each lasting 15-20 minutes (starting at 1/2-4 hours); restlessness, sadness, hopelessness (10 hours); irritability, trouble concentrating, insomnia, hunger and weight gain (5-10 pounds over 2 weeks, starting 24 hrs); headaches, dizziness, fatigue (starting 2 days); and anxiety (starting 3 days). There tends to be less brain fog, and less hunger after 2-4 weeks, but depression, anxiety, irritability, cough, constipation, and even suicidal thoughts may last weeks to months. Sounds nasty, right? No wonder quitting is so hard.
Support is crucial to quitting and staying off nicotine. You can provide this but, in addition to friends and family, we should connect youth to free ongoing phone counselors (1-800-QUIT-NOW or 877-44U-QUIT for Spanish), text services (text QUIT to 47848), apps (quit START), or community support.
While behavioral treatments are best for youth with minimal to mild dependence, risk of relapse is minimized with fewer withdrawal symptoms, thus the role for nicotine replacement therapy (NRT) for those with moderate to strong dependence and to help anyone ad lib with cravings. NRT is recommended by the American Academy of Pediatrics (AAP) to supplement counseling, although NRT is not Food and Drug Administration approved and requires a prescription for those under 18.
How can we determine the degree of dependence? Smoking more than 15 cigarettes per day (or vape equivalent) and inhaling even “seldom” counts as “moderate” dependence and more than 26 with difficulty refraining in several situations as “substantial” in the Fagerstrom Tolerance test. Early morning smoking is asked about, important to which NRT to use (gum or lozenge for faster onset). The Hooked on Nicotine Checklist assesses “loss of autonomy” over smoking by any “yes” item and is incorporated in the CRAFFT screen. The recommended dose of NRT and length of weaning is greater in substantial addiction versus moderate. Besides gum, lozenges, patch, inhaler, and nasal spray, you can prescribe bupropion (Wellbutrin or Zyban) or varenicline (Chantix), making note of the black box suicide warning. Combining NRTs is similarly effective compared with varenicline.
Relapse after quitting is more common than not. As for any chronic condition, in relapse we need to query adherence, and consider increasing NRT dose or wean duration, even years. Discussion should have a positive focus on “what was learned” from past attempts in making a new plan that incorporates Relevance, Risks, Rewards, Roadblocks, and Repetition.
Many youth smokers start because their parents smoke. While addressing adults may seem out of scope, we often treat parents when managing scabies, pinworms, meningococcal disease, and even depression for the benefit of the child. The AAP recommends prescribing NRT for parents, when needed.
Nicotine dependence is a chronic relapsing condition with comorbidities of substance use and psychiatric disorders that requires similar monitoring and support as for other chronic conditions we manage and is more likely to shorten lifespan than many.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Clinical practice policy to protect children from tobacco, nicotine, and tobacco smoke, Pediatrics 2015;136(5):1008-17. doi: 10.1542/peds.2015-31088.
When asked, young people report that their reasons for starting smoking include rebellion, a new thing to try, and a peer social activity, among others. While you recognize these as developmentally expected drives, it is frustrating and scary that youth don’t realize how their brains are especially sensitive to permanent changes from nicotine.
Smoking even five packs of cigarettes is enough to cause addiction in youth; an influence as powerful as for cocaine or heroin. One pod of a vaping device delivers as much nicotine as one to five packs of cigarettes, depending on the strength and brand. There are no standards for this content and youth often are unaware of any nicotine and chemicals in vapes. Over 90% of adult smokers started before age 18, some as young as 6, mainly because quitting is so difficult. Cigarettes and vaping are not the only sources of nicotine used by youth; others are oral tobacco (chewing tobacco and dip), cigars, pipes, snus (between cheek and gum), hookahs, electronic devices, bidis (tobacco in a tendu leaf), kreteks (tobacco with cloves), and dissolvable tobacco products. Many youth use both cigarettes and noncigarette tobacco.
Given these predispositions, short-term COVID-19 and asthma exacerbation, and the long-lasting detriment of smoking on neurological, cardiac, pulmonary, and emotional health, actually the “leading preventable cause of death,” our job as pediatric providers is to do our best to prevent smoking/vaping or help our patients quit. But adolescent development is notoriously characterized by short-term thinking and feeling immune from long-term health consequences. So what approach has the best results? Focus on aspects of smoking important to the youth now, such as sports performance, bad breath, social stigma, insomnia, cost, lack of benefit for weight loss, and hazardous waste produced. Add to that loss of independence and being manipulated by Big Business by getting them (and targeted minorities) hooked may be salient in our discussion.
Even a brief 3-minute discussion using the AAC (Ask/Assess, Advise, Connect) format has shown effectiveness in getting teens and adults to quit smoking. Our assessment needs to include asking the extent of current use and symptoms of dependence to inform the treatment plan. We need to use their trust in us to advise that quitting is the best thing they can do for their health.
If the youth’s readiness stage is “thinking about stopping” nicotine, our motivational interview–style discussion of pros and cons could include asking “How important is it to you to stop?” and “What are some things that would help you?” If they are open to trying to stop, advise them to set a quit date within 2 weeks and suggest reducing gradually before then (and schedule follow-up). The plan needs to include dealing with the inevitable urges by finding ways to avoid current triggers to smoke (e.g., certain school bathrooms, people drinking or smoking, or stress over homework, conflict at home, etc.). Encourage exercise and meditation to distract and deal with the anxiety; asking family to quit; having a snack handy (such as sugarless gum or sunflower seeds) for when oral cravings develop; and setting rewards for early days of smoke-free success. We need to inform youth that using e-cigs actually reduces rates of success in quitting.
We need to warn youth of the withdrawal symptoms and their usual course when quitting: cravings each lasting 15-20 minutes (starting at 1/2-4 hours); restlessness, sadness, hopelessness (10 hours); irritability, trouble concentrating, insomnia, hunger and weight gain (5-10 pounds over 2 weeks, starting 24 hrs); headaches, dizziness, fatigue (starting 2 days); and anxiety (starting 3 days). There tends to be less brain fog, and less hunger after 2-4 weeks, but depression, anxiety, irritability, cough, constipation, and even suicidal thoughts may last weeks to months. Sounds nasty, right? No wonder quitting is so hard.
Support is crucial to quitting and staying off nicotine. You can provide this but, in addition to friends and family, we should connect youth to free ongoing phone counselors (1-800-QUIT-NOW or 877-44U-QUIT for Spanish), text services (text QUIT to 47848), apps (quit START), or community support.
While behavioral treatments are best for youth with minimal to mild dependence, risk of relapse is minimized with fewer withdrawal symptoms, thus the role for nicotine replacement therapy (NRT) for those with moderate to strong dependence and to help anyone ad lib with cravings. NRT is recommended by the American Academy of Pediatrics (AAP) to supplement counseling, although NRT is not Food and Drug Administration approved and requires a prescription for those under 18.
How can we determine the degree of dependence? Smoking more than 15 cigarettes per day (or vape equivalent) and inhaling even “seldom” counts as “moderate” dependence and more than 26 with difficulty refraining in several situations as “substantial” in the Fagerstrom Tolerance test. Early morning smoking is asked about, important to which NRT to use (gum or lozenge for faster onset). The Hooked on Nicotine Checklist assesses “loss of autonomy” over smoking by any “yes” item and is incorporated in the CRAFFT screen. The recommended dose of NRT and length of weaning is greater in substantial addiction versus moderate. Besides gum, lozenges, patch, inhaler, and nasal spray, you can prescribe bupropion (Wellbutrin or Zyban) or varenicline (Chantix), making note of the black box suicide warning. Combining NRTs is similarly effective compared with varenicline.
Relapse after quitting is more common than not. As for any chronic condition, in relapse we need to query adherence, and consider increasing NRT dose or wean duration, even years. Discussion should have a positive focus on “what was learned” from past attempts in making a new plan that incorporates Relevance, Risks, Rewards, Roadblocks, and Repetition.
Many youth smokers start because their parents smoke. While addressing adults may seem out of scope, we often treat parents when managing scabies, pinworms, meningococcal disease, and even depression for the benefit of the child. The AAP recommends prescribing NRT for parents, when needed.
Nicotine dependence is a chronic relapsing condition with comorbidities of substance use and psychiatric disorders that requires similar monitoring and support as for other chronic conditions we manage and is more likely to shorten lifespan than many.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Clinical practice policy to protect children from tobacco, nicotine, and tobacco smoke, Pediatrics 2015;136(5):1008-17. doi: 10.1542/peds.2015-31088.
When asked, young people report that their reasons for starting smoking include rebellion, a new thing to try, and a peer social activity, among others. While you recognize these as developmentally expected drives, it is frustrating and scary that youth don’t realize how their brains are especially sensitive to permanent changes from nicotine.
Smoking even five packs of cigarettes is enough to cause addiction in youth; an influence as powerful as for cocaine or heroin. One pod of a vaping device delivers as much nicotine as one to five packs of cigarettes, depending on the strength and brand. There are no standards for this content and youth often are unaware of any nicotine and chemicals in vapes. Over 90% of adult smokers started before age 18, some as young as 6, mainly because quitting is so difficult. Cigarettes and vaping are not the only sources of nicotine used by youth; others are oral tobacco (chewing tobacco and dip), cigars, pipes, snus (between cheek and gum), hookahs, electronic devices, bidis (tobacco in a tendu leaf), kreteks (tobacco with cloves), and dissolvable tobacco products. Many youth use both cigarettes and noncigarette tobacco.
Given these predispositions, short-term COVID-19 and asthma exacerbation, and the long-lasting detriment of smoking on neurological, cardiac, pulmonary, and emotional health, actually the “leading preventable cause of death,” our job as pediatric providers is to do our best to prevent smoking/vaping or help our patients quit. But adolescent development is notoriously characterized by short-term thinking and feeling immune from long-term health consequences. So what approach has the best results? Focus on aspects of smoking important to the youth now, such as sports performance, bad breath, social stigma, insomnia, cost, lack of benefit for weight loss, and hazardous waste produced. Add to that loss of independence and being manipulated by Big Business by getting them (and targeted minorities) hooked may be salient in our discussion.
Even a brief 3-minute discussion using the AAC (Ask/Assess, Advise, Connect) format has shown effectiveness in getting teens and adults to quit smoking. Our assessment needs to include asking the extent of current use and symptoms of dependence to inform the treatment plan. We need to use their trust in us to advise that quitting is the best thing they can do for their health.
If the youth’s readiness stage is “thinking about stopping” nicotine, our motivational interview–style discussion of pros and cons could include asking “How important is it to you to stop?” and “What are some things that would help you?” If they are open to trying to stop, advise them to set a quit date within 2 weeks and suggest reducing gradually before then (and schedule follow-up). The plan needs to include dealing with the inevitable urges by finding ways to avoid current triggers to smoke (e.g., certain school bathrooms, people drinking or smoking, or stress over homework, conflict at home, etc.). Encourage exercise and meditation to distract and deal with the anxiety; asking family to quit; having a snack handy (such as sugarless gum or sunflower seeds) for when oral cravings develop; and setting rewards for early days of smoke-free success. We need to inform youth that using e-cigs actually reduces rates of success in quitting.
We need to warn youth of the withdrawal symptoms and their usual course when quitting: cravings each lasting 15-20 minutes (starting at 1/2-4 hours); restlessness, sadness, hopelessness (10 hours); irritability, trouble concentrating, insomnia, hunger and weight gain (5-10 pounds over 2 weeks, starting 24 hrs); headaches, dizziness, fatigue (starting 2 days); and anxiety (starting 3 days). There tends to be less brain fog, and less hunger after 2-4 weeks, but depression, anxiety, irritability, cough, constipation, and even suicidal thoughts may last weeks to months. Sounds nasty, right? No wonder quitting is so hard.
Support is crucial to quitting and staying off nicotine. You can provide this but, in addition to friends and family, we should connect youth to free ongoing phone counselors (1-800-QUIT-NOW or 877-44U-QUIT for Spanish), text services (text QUIT to 47848), apps (quit START), or community support.
While behavioral treatments are best for youth with minimal to mild dependence, risk of relapse is minimized with fewer withdrawal symptoms, thus the role for nicotine replacement therapy (NRT) for those with moderate to strong dependence and to help anyone ad lib with cravings. NRT is recommended by the American Academy of Pediatrics (AAP) to supplement counseling, although NRT is not Food and Drug Administration approved and requires a prescription for those under 18.
How can we determine the degree of dependence? Smoking more than 15 cigarettes per day (or vape equivalent) and inhaling even “seldom” counts as “moderate” dependence and more than 26 with difficulty refraining in several situations as “substantial” in the Fagerstrom Tolerance test. Early morning smoking is asked about, important to which NRT to use (gum or lozenge for faster onset). The Hooked on Nicotine Checklist assesses “loss of autonomy” over smoking by any “yes” item and is incorporated in the CRAFFT screen. The recommended dose of NRT and length of weaning is greater in substantial addiction versus moderate. Besides gum, lozenges, patch, inhaler, and nasal spray, you can prescribe bupropion (Wellbutrin or Zyban) or varenicline (Chantix), making note of the black box suicide warning. Combining NRTs is similarly effective compared with varenicline.
Relapse after quitting is more common than not. As for any chronic condition, in relapse we need to query adherence, and consider increasing NRT dose or wean duration, even years. Discussion should have a positive focus on “what was learned” from past attempts in making a new plan that incorporates Relevance, Risks, Rewards, Roadblocks, and Repetition.
Many youth smokers start because their parents smoke. While addressing adults may seem out of scope, we often treat parents when managing scabies, pinworms, meningococcal disease, and even depression for the benefit of the child. The AAP recommends prescribing NRT for parents, when needed.
Nicotine dependence is a chronic relapsing condition with comorbidities of substance use and psychiatric disorders that requires similar monitoring and support as for other chronic conditions we manage and is more likely to shorten lifespan than many.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Clinical practice policy to protect children from tobacco, nicotine, and tobacco smoke, Pediatrics 2015;136(5):1008-17. doi: 10.1542/peds.2015-31088.
Don’t give up on relentless youth depression
As pediatricians, we are acutely aware of the increase in depression in our teen patients. Lifetime prevalence is now approaching 20%, and we are doing our best to help.
The Guidelines for Adolescent Depression in Primary Care (GLAD-PC, 2018) has advice on screening and primary care provider (PCP) management, verifying our role in care. But GLAD-PC also advises “referral to a mental health specialist” in patient scenarios we see multiple times per week. Even when patients are willing and able to go, mental health specialists are in short supply or have months-long waiting lists. What should we do to help the more severely depressed adolescent when immediate referral is not possible? What should we expect of specialist care for what is called treatment-resistant or treatment-refractory depression (TRD)?
To know what to do for a youth with TRD, first you need to know what constitutes an adequate trial of treatment. After diagnosis of major depressive disorder (MDD) from a validated screening tool or an interview based on DSM-5 criteria and an appropriate assessment (as described in GLAD-PC), patients and parents need education on symptoms, course, prognosis including suicide risk, and treatment options. Known TRD risk factors, besides longer or greater depression severity, anhedonia, and poor global functioning, can benefit from being specifically addressed: trauma, bullying, comorbid anxiety or substance use, subsyndromal mania, insomnia, hypothyroidism, nutritional deficiencies from eating disorders, certain genetic variants, LGBTQ identification, family conflict, and parental depression. Screening and assessment for suicidal ideation/attempts is needed initially and in follow-up as MDD increases risk of suicide 30 times.
PCPs can manage mild depression with regular visits every 1-2 weeks for active support for 6-8 weeks. Advise all depressed youth on healthy eating, adequate sleep and exercise, pleasurable activities, and refraining from substance use. With a full response (50%+ reduction in symptom score from baseline), monthly monitoring for symptoms, suicidality, and stressors (phone/televisits suffice) should continue for 6-24 months as half recur. Monitoring with ratings by both youth and parent are recommended and may be required by insurers. Scores below cutoff suggest “remission,” although functioning must be considered. Youth report symptoms best but parents may better report improved functioning and affect that can precede symptom reduction.
If there is no initial response (< 25% decrease in symptom score) or a partial response (25%-49% decrease), PCPs should begin treatment as for moderate depression with either a selective serotonin reuptake inhibitor (SSRI) or psychotherapy. Use of both has the best evidence; cognitive behavior therapy (CBT) and interpersonal psychotherapy for adolescents are equally effective.
Side effects from SSRIs are almost universal with GI upset, headaches, and sexual dysfunction most common, but activation (increased agitation or irritability) may occur. Educate patients about these and encourage tolerating them as they tend to subside in weeks, allowing continuation of these most effective medicines. Activation rarely indicates true mania, which would require stopping and referral.
Moderate depression with only comorbid anxiety may be addressed by PCPs with problem-focused supportive counseling and SSRIs, but mental health consultation or referral also are appropriate. Fluoxetine starting at 5-10 mg/day has best evidence and Food and Drug Administration approval for MDD from age 8. Starting at a higher dose may increase risk of suicidal ideation. Alternatively, escitalopram is FDA approved for MDD at age 12 starting at 10 mg/day, although meta-analyses do not distinguish effectiveness within the SSRI class. Although benefit usually appears within 2 weeks, a trial of at least 4 weeks should be used to assess effect.
If after 4 weeks, the SSRI is tolerated but has little or no response, reassess the diagnosis, try a different SSRI, e.g. sertraline, and add CBT (combined SSRI+CBT has an advantage). To switch SSRIs, reduce the first every 1-2 weeks (by 10-20 mg for fluoxetine; 5-10 for escitalopram) to reduce side effects. If overlapping, the replacement SSRI may start midway in the wean at low dose with patients educated about serotonin syndrome. If instead there was a partial response to the initial SSRI, progressively increase the dose (by 10 mg for fluoxetine or 5 mg for escitalopram monthly) as indicated by symptom change up to the maximum (60-80 mg fluoxetine or 20 mg escitalopram), if needed, and maintain for another 4 weeks. Alternatively, or in addition, start psychotherapy or ask to change current therapy, as therapy focus makes a difference in effect. Initial CBT focus on anxiety acts fastest when anxiety is comorbid.
Once a regimen produces a response, maintain it for 16-20 weeks, the longer for more severe depression. Although three-fourths of mildly to moderately depressed youth are late responders, emerging near 6 weeks, a rapid initial response is associated with better outcome. The recommended 8 weeks on a final tolerated dose constituting an adequate trial before changing may be shortened to 6 weeks in severe unremitting cases. Youth not remitting by 12 weeks should be offered alternative treatment. Referral is recommended for moderately severe depression with comorbidity or severe depression but also for unresponsive moderate depression or by family or clinician preference.
Treatment-resistant depression is defined as “clinically impairing depression symptoms despite an adequate trial of an evidence-based psychotherapy and an antidepressant with grade A evidence (fluoxetine, escitalopram, or sertraline),” sequentially or together; treatment-refractory depression comprises the above with failure on at least two antidepressants, with at least one being grade A. Unfortunately, TRD occurs in 30%-40% of children and remission is only 30%. Low adherence based on pill counts (> 30% missed) or with therapy (fewer than nine visits) should be considered in treatment failures.
With manageable factors addressed, the next step for TRD is treatment augmentation. The best evidence-based augmentation for TRD is CBT; 55% of those receiving CBT responded within 12 weeks. TRD augmentations and interventions with evidence in adults have either no evidence of effect in children (SNRIs, lithium), no randomized controlled trials, or support only from small suggestive studies, e.g., antipsychotics, 16 g/day omega-3 fatty acid supplementation, folic acid supplementation, repetitive transcranial magnetic stimulation, electroconvulsive therapy, or ketamine. Prompt referral to a child psychiatrist is essential for youth classified as TRD as earlier more aggressive treatment may avoid the long-term morbidity of chronic depression.
Fortunately, a meta-analysis of studies showed that PCP medication management visits with monitoring could improve outcomes, even for TRD.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Dwyer J et al. Annual research review: Defining and treating pediatric treatment-resistant depression. J Child Psychol Psychiatry. 2020 March;61(3):312-32.
As pediatricians, we are acutely aware of the increase in depression in our teen patients. Lifetime prevalence is now approaching 20%, and we are doing our best to help.
The Guidelines for Adolescent Depression in Primary Care (GLAD-PC, 2018) has advice on screening and primary care provider (PCP) management, verifying our role in care. But GLAD-PC also advises “referral to a mental health specialist” in patient scenarios we see multiple times per week. Even when patients are willing and able to go, mental health specialists are in short supply or have months-long waiting lists. What should we do to help the more severely depressed adolescent when immediate referral is not possible? What should we expect of specialist care for what is called treatment-resistant or treatment-refractory depression (TRD)?
To know what to do for a youth with TRD, first you need to know what constitutes an adequate trial of treatment. After diagnosis of major depressive disorder (MDD) from a validated screening tool or an interview based on DSM-5 criteria and an appropriate assessment (as described in GLAD-PC), patients and parents need education on symptoms, course, prognosis including suicide risk, and treatment options. Known TRD risk factors, besides longer or greater depression severity, anhedonia, and poor global functioning, can benefit from being specifically addressed: trauma, bullying, comorbid anxiety or substance use, subsyndromal mania, insomnia, hypothyroidism, nutritional deficiencies from eating disorders, certain genetic variants, LGBTQ identification, family conflict, and parental depression. Screening and assessment for suicidal ideation/attempts is needed initially and in follow-up as MDD increases risk of suicide 30 times.
PCPs can manage mild depression with regular visits every 1-2 weeks for active support for 6-8 weeks. Advise all depressed youth on healthy eating, adequate sleep and exercise, pleasurable activities, and refraining from substance use. With a full response (50%+ reduction in symptom score from baseline), monthly monitoring for symptoms, suicidality, and stressors (phone/televisits suffice) should continue for 6-24 months as half recur. Monitoring with ratings by both youth and parent are recommended and may be required by insurers. Scores below cutoff suggest “remission,” although functioning must be considered. Youth report symptoms best but parents may better report improved functioning and affect that can precede symptom reduction.
If there is no initial response (< 25% decrease in symptom score) or a partial response (25%-49% decrease), PCPs should begin treatment as for moderate depression with either a selective serotonin reuptake inhibitor (SSRI) or psychotherapy. Use of both has the best evidence; cognitive behavior therapy (CBT) and interpersonal psychotherapy for adolescents are equally effective.
Side effects from SSRIs are almost universal with GI upset, headaches, and sexual dysfunction most common, but activation (increased agitation or irritability) may occur. Educate patients about these and encourage tolerating them as they tend to subside in weeks, allowing continuation of these most effective medicines. Activation rarely indicates true mania, which would require stopping and referral.
Moderate depression with only comorbid anxiety may be addressed by PCPs with problem-focused supportive counseling and SSRIs, but mental health consultation or referral also are appropriate. Fluoxetine starting at 5-10 mg/day has best evidence and Food and Drug Administration approval for MDD from age 8. Starting at a higher dose may increase risk of suicidal ideation. Alternatively, escitalopram is FDA approved for MDD at age 12 starting at 10 mg/day, although meta-analyses do not distinguish effectiveness within the SSRI class. Although benefit usually appears within 2 weeks, a trial of at least 4 weeks should be used to assess effect.
If after 4 weeks, the SSRI is tolerated but has little or no response, reassess the diagnosis, try a different SSRI, e.g. sertraline, and add CBT (combined SSRI+CBT has an advantage). To switch SSRIs, reduce the first every 1-2 weeks (by 10-20 mg for fluoxetine; 5-10 for escitalopram) to reduce side effects. If overlapping, the replacement SSRI may start midway in the wean at low dose with patients educated about serotonin syndrome. If instead there was a partial response to the initial SSRI, progressively increase the dose (by 10 mg for fluoxetine or 5 mg for escitalopram monthly) as indicated by symptom change up to the maximum (60-80 mg fluoxetine or 20 mg escitalopram), if needed, and maintain for another 4 weeks. Alternatively, or in addition, start psychotherapy or ask to change current therapy, as therapy focus makes a difference in effect. Initial CBT focus on anxiety acts fastest when anxiety is comorbid.
Once a regimen produces a response, maintain it for 16-20 weeks, the longer for more severe depression. Although three-fourths of mildly to moderately depressed youth are late responders, emerging near 6 weeks, a rapid initial response is associated with better outcome. The recommended 8 weeks on a final tolerated dose constituting an adequate trial before changing may be shortened to 6 weeks in severe unremitting cases. Youth not remitting by 12 weeks should be offered alternative treatment. Referral is recommended for moderately severe depression with comorbidity or severe depression but also for unresponsive moderate depression or by family or clinician preference.
Treatment-resistant depression is defined as “clinically impairing depression symptoms despite an adequate trial of an evidence-based psychotherapy and an antidepressant with grade A evidence (fluoxetine, escitalopram, or sertraline),” sequentially or together; treatment-refractory depression comprises the above with failure on at least two antidepressants, with at least one being grade A. Unfortunately, TRD occurs in 30%-40% of children and remission is only 30%. Low adherence based on pill counts (> 30% missed) or with therapy (fewer than nine visits) should be considered in treatment failures.
With manageable factors addressed, the next step for TRD is treatment augmentation. The best evidence-based augmentation for TRD is CBT; 55% of those receiving CBT responded within 12 weeks. TRD augmentations and interventions with evidence in adults have either no evidence of effect in children (SNRIs, lithium), no randomized controlled trials, or support only from small suggestive studies, e.g., antipsychotics, 16 g/day omega-3 fatty acid supplementation, folic acid supplementation, repetitive transcranial magnetic stimulation, electroconvulsive therapy, or ketamine. Prompt referral to a child psychiatrist is essential for youth classified as TRD as earlier more aggressive treatment may avoid the long-term morbidity of chronic depression.
Fortunately, a meta-analysis of studies showed that PCP medication management visits with monitoring could improve outcomes, even for TRD.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Dwyer J et al. Annual research review: Defining and treating pediatric treatment-resistant depression. J Child Psychol Psychiatry. 2020 March;61(3):312-32.
As pediatricians, we are acutely aware of the increase in depression in our teen patients. Lifetime prevalence is now approaching 20%, and we are doing our best to help.
The Guidelines for Adolescent Depression in Primary Care (GLAD-PC, 2018) has advice on screening and primary care provider (PCP) management, verifying our role in care. But GLAD-PC also advises “referral to a mental health specialist” in patient scenarios we see multiple times per week. Even when patients are willing and able to go, mental health specialists are in short supply or have months-long waiting lists. What should we do to help the more severely depressed adolescent when immediate referral is not possible? What should we expect of specialist care for what is called treatment-resistant or treatment-refractory depression (TRD)?
To know what to do for a youth with TRD, first you need to know what constitutes an adequate trial of treatment. After diagnosis of major depressive disorder (MDD) from a validated screening tool or an interview based on DSM-5 criteria and an appropriate assessment (as described in GLAD-PC), patients and parents need education on symptoms, course, prognosis including suicide risk, and treatment options. Known TRD risk factors, besides longer or greater depression severity, anhedonia, and poor global functioning, can benefit from being specifically addressed: trauma, bullying, comorbid anxiety or substance use, subsyndromal mania, insomnia, hypothyroidism, nutritional deficiencies from eating disorders, certain genetic variants, LGBTQ identification, family conflict, and parental depression. Screening and assessment for suicidal ideation/attempts is needed initially and in follow-up as MDD increases risk of suicide 30 times.
PCPs can manage mild depression with regular visits every 1-2 weeks for active support for 6-8 weeks. Advise all depressed youth on healthy eating, adequate sleep and exercise, pleasurable activities, and refraining from substance use. With a full response (50%+ reduction in symptom score from baseline), monthly monitoring for symptoms, suicidality, and stressors (phone/televisits suffice) should continue for 6-24 months as half recur. Monitoring with ratings by both youth and parent are recommended and may be required by insurers. Scores below cutoff suggest “remission,” although functioning must be considered. Youth report symptoms best but parents may better report improved functioning and affect that can precede symptom reduction.
If there is no initial response (< 25% decrease in symptom score) or a partial response (25%-49% decrease), PCPs should begin treatment as for moderate depression with either a selective serotonin reuptake inhibitor (SSRI) or psychotherapy. Use of both has the best evidence; cognitive behavior therapy (CBT) and interpersonal psychotherapy for adolescents are equally effective.
Side effects from SSRIs are almost universal with GI upset, headaches, and sexual dysfunction most common, but activation (increased agitation or irritability) may occur. Educate patients about these and encourage tolerating them as they tend to subside in weeks, allowing continuation of these most effective medicines. Activation rarely indicates true mania, which would require stopping and referral.
Moderate depression with only comorbid anxiety may be addressed by PCPs with problem-focused supportive counseling and SSRIs, but mental health consultation or referral also are appropriate. Fluoxetine starting at 5-10 mg/day has best evidence and Food and Drug Administration approval for MDD from age 8. Starting at a higher dose may increase risk of suicidal ideation. Alternatively, escitalopram is FDA approved for MDD at age 12 starting at 10 mg/day, although meta-analyses do not distinguish effectiveness within the SSRI class. Although benefit usually appears within 2 weeks, a trial of at least 4 weeks should be used to assess effect.
If after 4 weeks, the SSRI is tolerated but has little or no response, reassess the diagnosis, try a different SSRI, e.g. sertraline, and add CBT (combined SSRI+CBT has an advantage). To switch SSRIs, reduce the first every 1-2 weeks (by 10-20 mg for fluoxetine; 5-10 for escitalopram) to reduce side effects. If overlapping, the replacement SSRI may start midway in the wean at low dose with patients educated about serotonin syndrome. If instead there was a partial response to the initial SSRI, progressively increase the dose (by 10 mg for fluoxetine or 5 mg for escitalopram monthly) as indicated by symptom change up to the maximum (60-80 mg fluoxetine or 20 mg escitalopram), if needed, and maintain for another 4 weeks. Alternatively, or in addition, start psychotherapy or ask to change current therapy, as therapy focus makes a difference in effect. Initial CBT focus on anxiety acts fastest when anxiety is comorbid.
Once a regimen produces a response, maintain it for 16-20 weeks, the longer for more severe depression. Although three-fourths of mildly to moderately depressed youth are late responders, emerging near 6 weeks, a rapid initial response is associated with better outcome. The recommended 8 weeks on a final tolerated dose constituting an adequate trial before changing may be shortened to 6 weeks in severe unremitting cases. Youth not remitting by 12 weeks should be offered alternative treatment. Referral is recommended for moderately severe depression with comorbidity or severe depression but also for unresponsive moderate depression or by family or clinician preference.
Treatment-resistant depression is defined as “clinically impairing depression symptoms despite an adequate trial of an evidence-based psychotherapy and an antidepressant with grade A evidence (fluoxetine, escitalopram, or sertraline),” sequentially or together; treatment-refractory depression comprises the above with failure on at least two antidepressants, with at least one being grade A. Unfortunately, TRD occurs in 30%-40% of children and remission is only 30%. Low adherence based on pill counts (> 30% missed) or with therapy (fewer than nine visits) should be considered in treatment failures.
With manageable factors addressed, the next step for TRD is treatment augmentation. The best evidence-based augmentation for TRD is CBT; 55% of those receiving CBT responded within 12 weeks. TRD augmentations and interventions with evidence in adults have either no evidence of effect in children (SNRIs, lithium), no randomized controlled trials, or support only from small suggestive studies, e.g., antipsychotics, 16 g/day omega-3 fatty acid supplementation, folic acid supplementation, repetitive transcranial magnetic stimulation, electroconvulsive therapy, or ketamine. Prompt referral to a child psychiatrist is essential for youth classified as TRD as earlier more aggressive treatment may avoid the long-term morbidity of chronic depression.
Fortunately, a meta-analysis of studies showed that PCP medication management visits with monitoring could improve outcomes, even for TRD.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Reference
Dwyer J et al. Annual research review: Defining and treating pediatric treatment-resistant depression. J Child Psychol Psychiatry. 2020 March;61(3):312-32.
Sorting out the meaning of misbehavior: The invisible culprit
You have probably heard that determining the A(ntecedent)s, B(ehavior)s, and C(onsequence)s of a behavior is basic to counseling about oppositionality or aggression. But sorting out the As is especially important to going beyond disciplining a misbehavior to building insight for both parents and children.
Antecedents are of two types: triggers such as actions, words, or feelings that happen just before the behavior, and “setting events” that can occur intermittently hours or even days beforehand and lower the threshold for a trigger to cause a child to act out. Lack of sleep, hunger, or fatigue are common setting events that parents recognize and take into account as in “Oh, he missed his nap” to excuse a tantrum in younger children, but is less often considered or excused in older children in whom self-regulation is expected. Often, behavioral specialists in schools are asked to observe a child to identify the triggers and create a “functional behavioral assessment” based on what is observed.
While a functional behavioral assessment requires observations, invisible antecedents to consider include internal thoughts and feelings (meaning). A child feeling shame from a failed math test the day before may be on edge, then, when called on, may uncharacteristically talk back. The child may regard punishment for this “justified” response as unfair, accelerating anger. Feelings of shame or humiliation for failing one’s own standards (or perceived expectations of others the child cares about) are major setups for eliciting defiance.
Even more subtle are meanings the child creates for situations and people, whether real or imagined. A child’s behavior has meaning for the child and the family and can be initiated or maintained by that meaning. For example, a child may “live down” to what the family thinks of him/her; if you think I am bad, I will act badly.
Children may feel guilty about some real or imagined offense, such as divorce or death they think may be their fault, and act up with the family to elicit punishment as payment. When children feel conflicted in a relationship, such as a late adolescent feeling dependent on their mother when their age expectation is independence, they may act up expecting to be ejected from home when they are unable to gather the courage to voluntarily leave. This acting out may also occur with nonconflicted adults, who are actually safer targets. For example, school is often a safer place to express anger through aggression or bullying than home, the real source of the feelings, because family is the “lifeboat” of food and shelter they dare not upset.
Conflicted relationships may be present in blended families, especially if the ex speaks negatively about the other parent. The child of divorce, feeling himself composed of parts of each parent, has diminished self-esteem and anger on behalf of that side being put down. Marital conflict may set children up to feel they have to take sides to angrily defend the parent of like-gender by being oppositional to the other.
Just as we ponder whether the color blue looks the same to someone else, neurologically based differences in perception may make a child misinterpret or act inflexibly or explode in situations that seem normal to adults. While people joke about “being a little OCD,” for some children the distress caused by a change in routine, a messy room, a delayed bus, or loud music is enough to disrupt their functioning and coping enough to explode. Such hypersensitivity can be part of autism or obsessive compulsive disorder or a subthreshold variant. Children vary by age and individually in their ability to understand language, especially sarcastic humor, and often misinterpret it as insulting, threatening, or scary and act accordingly. While most common in children with autism, those with a language learning disability, intellectual disability, or who have English as a second language, or are anxious or vigilant may also take sarcasm the wrong way. Anxious children also may react aggressively from a “hostile bias attribution” of expecting the worst from others.
Another possible meaning of a behavior is that it is being used by the child to manage their feelings. I have found it useful to remind depressed children and parents that it “feels better to be mad than sad” as a reason for irritability. Anger can also push away a person whose otherwise sympathetic approach might release a collapse into tears the child can’t tolerate or would find embarrassing.
The meaning of a child’s misbehavior also resides in the minds of the adults. In addition to all the categories of meaning just described, a parent may be reminded by the child of someone else for whom the adult has strong or conflicted feelings (“projection”) such as a now-hated ex, a sibling of whom the adult is jealous, or a bully from childhood, thus eliciting a reaction falsely triggered by that connection rather than the actual child. Asking parents whom the child “takes after” may elicit such parental projections based on appearance, behavior, or temperament. Helping them pick a feature of the child to focus on to differentiate him/her can serve as an anchor to remind them to control these reactions. Other useful questions to detect meanings of behavior might include asking the child “What’s up with that?” or “What did that make you think/feel?” We can ask parents “How is that for you?” or “What do you think things will be like in 10 years?” to determine despair, mood disorders, or family discord contributing to maladaptive responses possibly maintaining unwanted behaviors.
Throughout life, putting feelings into words is the main way meanings that are contributing to misbehaviors or parenting dysfunction can be uncovered and shifted. For this, the child or adult must feel emotionally safe to talk with a person who conveys curiosity rather than judgment. Helping families explain that divorce is not the child’s fault; admit they also make mistakes; rebuild conflicted relationships through play or talking; identify hypersensitivities or triggers to avoid; and express confidence that the child is a good person, still young, and sure to do better over time, are all things we pediatricians can do to help sort out the meanings of behaviors.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
You have probably heard that determining the A(ntecedent)s, B(ehavior)s, and C(onsequence)s of a behavior is basic to counseling about oppositionality or aggression. But sorting out the As is especially important to going beyond disciplining a misbehavior to building insight for both parents and children.
Antecedents are of two types: triggers such as actions, words, or feelings that happen just before the behavior, and “setting events” that can occur intermittently hours or even days beforehand and lower the threshold for a trigger to cause a child to act out. Lack of sleep, hunger, or fatigue are common setting events that parents recognize and take into account as in “Oh, he missed his nap” to excuse a tantrum in younger children, but is less often considered or excused in older children in whom self-regulation is expected. Often, behavioral specialists in schools are asked to observe a child to identify the triggers and create a “functional behavioral assessment” based on what is observed.
While a functional behavioral assessment requires observations, invisible antecedents to consider include internal thoughts and feelings (meaning). A child feeling shame from a failed math test the day before may be on edge, then, when called on, may uncharacteristically talk back. The child may regard punishment for this “justified” response as unfair, accelerating anger. Feelings of shame or humiliation for failing one’s own standards (or perceived expectations of others the child cares about) are major setups for eliciting defiance.
Even more subtle are meanings the child creates for situations and people, whether real or imagined. A child’s behavior has meaning for the child and the family and can be initiated or maintained by that meaning. For example, a child may “live down” to what the family thinks of him/her; if you think I am bad, I will act badly.
Children may feel guilty about some real or imagined offense, such as divorce or death they think may be their fault, and act up with the family to elicit punishment as payment. When children feel conflicted in a relationship, such as a late adolescent feeling dependent on their mother when their age expectation is independence, they may act up expecting to be ejected from home when they are unable to gather the courage to voluntarily leave. This acting out may also occur with nonconflicted adults, who are actually safer targets. For example, school is often a safer place to express anger through aggression or bullying than home, the real source of the feelings, because family is the “lifeboat” of food and shelter they dare not upset.
Conflicted relationships may be present in blended families, especially if the ex speaks negatively about the other parent. The child of divorce, feeling himself composed of parts of each parent, has diminished self-esteem and anger on behalf of that side being put down. Marital conflict may set children up to feel they have to take sides to angrily defend the parent of like-gender by being oppositional to the other.
Just as we ponder whether the color blue looks the same to someone else, neurologically based differences in perception may make a child misinterpret or act inflexibly or explode in situations that seem normal to adults. While people joke about “being a little OCD,” for some children the distress caused by a change in routine, a messy room, a delayed bus, or loud music is enough to disrupt their functioning and coping enough to explode. Such hypersensitivity can be part of autism or obsessive compulsive disorder or a subthreshold variant. Children vary by age and individually in their ability to understand language, especially sarcastic humor, and often misinterpret it as insulting, threatening, or scary and act accordingly. While most common in children with autism, those with a language learning disability, intellectual disability, or who have English as a second language, or are anxious or vigilant may also take sarcasm the wrong way. Anxious children also may react aggressively from a “hostile bias attribution” of expecting the worst from others.
Another possible meaning of a behavior is that it is being used by the child to manage their feelings. I have found it useful to remind depressed children and parents that it “feels better to be mad than sad” as a reason for irritability. Anger can also push away a person whose otherwise sympathetic approach might release a collapse into tears the child can’t tolerate or would find embarrassing.
The meaning of a child’s misbehavior also resides in the minds of the adults. In addition to all the categories of meaning just described, a parent may be reminded by the child of someone else for whom the adult has strong or conflicted feelings (“projection”) such as a now-hated ex, a sibling of whom the adult is jealous, or a bully from childhood, thus eliciting a reaction falsely triggered by that connection rather than the actual child. Asking parents whom the child “takes after” may elicit such parental projections based on appearance, behavior, or temperament. Helping them pick a feature of the child to focus on to differentiate him/her can serve as an anchor to remind them to control these reactions. Other useful questions to detect meanings of behavior might include asking the child “What’s up with that?” or “What did that make you think/feel?” We can ask parents “How is that for you?” or “What do you think things will be like in 10 years?” to determine despair, mood disorders, or family discord contributing to maladaptive responses possibly maintaining unwanted behaviors.
Throughout life, putting feelings into words is the main way meanings that are contributing to misbehaviors or parenting dysfunction can be uncovered and shifted. For this, the child or adult must feel emotionally safe to talk with a person who conveys curiosity rather than judgment. Helping families explain that divorce is not the child’s fault; admit they also make mistakes; rebuild conflicted relationships through play or talking; identify hypersensitivities or triggers to avoid; and express confidence that the child is a good person, still young, and sure to do better over time, are all things we pediatricians can do to help sort out the meanings of behaviors.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
You have probably heard that determining the A(ntecedent)s, B(ehavior)s, and C(onsequence)s of a behavior is basic to counseling about oppositionality or aggression. But sorting out the As is especially important to going beyond disciplining a misbehavior to building insight for both parents and children.
Antecedents are of two types: triggers such as actions, words, or feelings that happen just before the behavior, and “setting events” that can occur intermittently hours or even days beforehand and lower the threshold for a trigger to cause a child to act out. Lack of sleep, hunger, or fatigue are common setting events that parents recognize and take into account as in “Oh, he missed his nap” to excuse a tantrum in younger children, but is less often considered or excused in older children in whom self-regulation is expected. Often, behavioral specialists in schools are asked to observe a child to identify the triggers and create a “functional behavioral assessment” based on what is observed.
While a functional behavioral assessment requires observations, invisible antecedents to consider include internal thoughts and feelings (meaning). A child feeling shame from a failed math test the day before may be on edge, then, when called on, may uncharacteristically talk back. The child may regard punishment for this “justified” response as unfair, accelerating anger. Feelings of shame or humiliation for failing one’s own standards (or perceived expectations of others the child cares about) are major setups for eliciting defiance.
Even more subtle are meanings the child creates for situations and people, whether real or imagined. A child’s behavior has meaning for the child and the family and can be initiated or maintained by that meaning. For example, a child may “live down” to what the family thinks of him/her; if you think I am bad, I will act badly.
Children may feel guilty about some real or imagined offense, such as divorce or death they think may be their fault, and act up with the family to elicit punishment as payment. When children feel conflicted in a relationship, such as a late adolescent feeling dependent on their mother when their age expectation is independence, they may act up expecting to be ejected from home when they are unable to gather the courage to voluntarily leave. This acting out may also occur with nonconflicted adults, who are actually safer targets. For example, school is often a safer place to express anger through aggression or bullying than home, the real source of the feelings, because family is the “lifeboat” of food and shelter they dare not upset.
Conflicted relationships may be present in blended families, especially if the ex speaks negatively about the other parent. The child of divorce, feeling himself composed of parts of each parent, has diminished self-esteem and anger on behalf of that side being put down. Marital conflict may set children up to feel they have to take sides to angrily defend the parent of like-gender by being oppositional to the other.
Just as we ponder whether the color blue looks the same to someone else, neurologically based differences in perception may make a child misinterpret or act inflexibly or explode in situations that seem normal to adults. While people joke about “being a little OCD,” for some children the distress caused by a change in routine, a messy room, a delayed bus, or loud music is enough to disrupt their functioning and coping enough to explode. Such hypersensitivity can be part of autism or obsessive compulsive disorder or a subthreshold variant. Children vary by age and individually in their ability to understand language, especially sarcastic humor, and often misinterpret it as insulting, threatening, or scary and act accordingly. While most common in children with autism, those with a language learning disability, intellectual disability, or who have English as a second language, or are anxious or vigilant may also take sarcasm the wrong way. Anxious children also may react aggressively from a “hostile bias attribution” of expecting the worst from others.
Another possible meaning of a behavior is that it is being used by the child to manage their feelings. I have found it useful to remind depressed children and parents that it “feels better to be mad than sad” as a reason for irritability. Anger can also push away a person whose otherwise sympathetic approach might release a collapse into tears the child can’t tolerate or would find embarrassing.
The meaning of a child’s misbehavior also resides in the minds of the adults. In addition to all the categories of meaning just described, a parent may be reminded by the child of someone else for whom the adult has strong or conflicted feelings (“projection”) such as a now-hated ex, a sibling of whom the adult is jealous, or a bully from childhood, thus eliciting a reaction falsely triggered by that connection rather than the actual child. Asking parents whom the child “takes after” may elicit such parental projections based on appearance, behavior, or temperament. Helping them pick a feature of the child to focus on to differentiate him/her can serve as an anchor to remind them to control these reactions. Other useful questions to detect meanings of behavior might include asking the child “What’s up with that?” or “What did that make you think/feel?” We can ask parents “How is that for you?” or “What do you think things will be like in 10 years?” to determine despair, mood disorders, or family discord contributing to maladaptive responses possibly maintaining unwanted behaviors.
Throughout life, putting feelings into words is the main way meanings that are contributing to misbehaviors or parenting dysfunction can be uncovered and shifted. For this, the child or adult must feel emotionally safe to talk with a person who conveys curiosity rather than judgment. Helping families explain that divorce is not the child’s fault; admit they also make mistakes; rebuild conflicted relationships through play or talking; identify hypersensitivities or triggers to avoid; and express confidence that the child is a good person, still young, and sure to do better over time, are all things we pediatricians can do to help sort out the meanings of behaviors.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
No more encopresis!
Wishful thinking. “Repeated involuntary passage of stool in the underwear after the acquisition of toileting skills (typically > 4 years of age) in the absence of overt neuromuscular anorectal dysfunction,” formerly called encopresis, certainly still exists, renamed functional fecal incontinence (FFI). You have surely cared for many children with FFI over the years, mostly the 80% retentive (constipated) type but newer information may make your management more successful!
The first step in managing FFI is detecting it. This may seem easy as we get a whiff of its presence, even if the child and parents are unaware because of habituation to the odor. Children lose sensation from rectal dilation by the stool mass and become unaware of leakage. But they also are ashamed of and deny “accidents,” hide soiled underwear, and keep distance from parents and peers. Our physical exam may reveal an abdominal mass or perianal stool. While there, check the anal wink, anus placement, lower spine integrity, and ankle reflexes for rare neurological causes. A rectal exam is not required if the story fits but, if not, may show a dilated rectal vault and hard mass. Blood work, x-ray, ultrasound, barium enemas, or manometry are rarely indicated.
Instead of counting on expressed concern, we should routinely ask children about large, painful, or infrequent poops. There are even Rome IV criteria for constipation – at least two of the following without organic pathology and with duration of at least 1 month: less than 2 defecations/week, a history of hard or painful stools, retentive posturing or excessive stool retention, large stools blocking the toilet, large rectal fecal mass, or at least 1 episode of incontinence/week. Our history should request this but parents are often unaware of their child’s patterns except for that blocked toilet!
Other actionable history includes struggles over toilet training, early anal fissure or painful stools, a history of “straining”, crying, or crossing legs (attempts to withhold), short stature and/or diarrhea (possible celiac disease), abdominal pain, poor appetite, or a diet high in milk products or low in fiber. Family history may suggest rare organic causes such as hypothyroidism, Hirschsprung disease, multiple endocrine neoplasia type 2, or celiac disease, but also constipation (in 55%). After the newborn period (imperforate anus or meconium ileus), 95% of constipation is functional.
While constipation has a worldwide prevalence of 9.5%, low exercise and low-fiber diet are particularly American. Low total food intake as a cause is uncommon in the United States but another reason to screen for food insecurity.
Patterns of behavior can predispose to constipation and FFI. For the child, oppositionality, social anxiety, depression, or eating disorders may interfere with sufficient stool frequency and relaxation needed to fully evacuate at home, daycare, or school. Query every child with ADHD about stool patterns as inattention to urge plus impatience with completing defection (and ODD) are common disorders leading to FFI. Parents who are overly demanding, intrusive, rushing, irritable, anxious, or obsessive may also make routine toileting stressful. When caregivers are neglectful, fail to maintain routines for eating, or ignore dirty diapers, toilet training is more likely to fail and constipation ensue.
Clean out and maintenance using medication are needed for FFI, but child and family behavior change are also critical; the combination has proven more successful. Both the child and parents need clear a explanation of how constipation develops from withholding, regardless of the reason (pain, anxiety, conflict, diet), leading to larger stools more difficult to pass as water is absorbed in the colon. The large mass stretches the bowel so that sensation and strength for motility is impaired and softer stool leaks by and out the rectum unbeknownst to the child. I find drawing “the rock of poop” in a dilated thin walled colon with nerves sparse and “liquid stool sneaking by” compared to a “muscular” colon with soft poop animates and objectifies this explanation. Making it clear that leaking is involuntary is key to having the parent and child directly forgive each other for prior anger, blaming, sneaking, or punishment. While the school-aged child needs to be in charge of toileting, resolving the conflict is essential.
The critical next step is cleaning out “the rocks,” which should only rarely be omitted. Polyethylene glycol (PEG, for example, Miralax) has the best evidence, tastes better (without electrolytes), and dosing 1-1.5 g/kg per day premixed in 10 mL/kg fluid of the child’s choice kept cold and swallowed within 30 minutes daily for 3-6 days until feces have no more chunks. This process disimpacts 95% of the time. Reassure parents of the long-term safety despite the warning on the label that it is intended for adult users. Lactulose or sorbitol (1 mL/kg, once or twice daily), magnesium hydroxide, bisacodyl, or senna are long second choices. Only if these fail should mineral oil 15-30 mL per year of age, up to 240 mL per day be used and then not in infants or if there is aspiration risk. While enemas (mineral oil, sodium phosphate, or saline) and p.o. PEG are equally effective, enemas are very intrusive and unnecessary. There is insufficient evidence for probiotics, prebiotics, or synbiotics.
It is crucial to be honest with the child and parents that clean out can be uncomfortable as cramping or leaking may occur. Thus, starting PEG after school on Friday and being prepared to stay home Monday (if rocks are still emerging) may be needed to avoid accidents.
After clean out, maintenance using daily PEG 0.4-0.8 g/kg per day (best) or lactulose needs to be continued for 2-6 or even 12 months to prevent relapse as the bowel recovers. Bowels need to produce 1-2 soft stools per day for 1 month before considering weaning off PEG. High-fiber (age of child plus 5-10 g/day) diet perpetually is more acceptable if we suggest Frosted Mini-Wheats, Fig Newtons, cookies or muffins baked with wheat bran, popcorn, or fruits with “p” in the name (for example, prunes, pears, apricots), Raisin Bran, or methylcellulose in juice or Popsicles, wafers (with jelly or frosting), or tablets. Infant diet can include brown sugar, or prune/apple/pear juice (Karo is no longer reliably osmotic). Diet needs to include 32-64 ounces of nonmilk fluids, although this will not serve as treatment alone. Limit cow milk to 16 oz. or consider eliminating it entirely if other treatments fail as cow milk is constipating.
Maintenance also requires coaching the child to commence “exercises” to “strengthen the bowel.” These consist of sitting with feet supported to elevate at the hip for 10 minutes by a timer after meals 2-3 times per day and pushing. Entertainment such as music, books, small toys, or a noncompetitive video game and/or rewards of cash, tokens, or treats may lighten the routine. These “exercises” need to be continued indefinitely and monitored with a stool diary. Monthly check-ins are essential to adherence and success, especially in the first 3-4 months, to address any relapses.
While constipation has consequences besides FFI: physical (abdominal pain, anal fissure, rectal prolapse, enuresis, UTI, vesicoureteral reflux, and upper urinary tract dilatation, poor appetite, or poor growth), emotional problems (lability, depression, anxiety, aggression, and low self-esteem), social problems (peer humiliation, teasing, rejection, parent upset, anger, shaming, and punishment), and school absence, we can be supportive and effective coaches for this chronic condition.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Wishful thinking. “Repeated involuntary passage of stool in the underwear after the acquisition of toileting skills (typically > 4 years of age) in the absence of overt neuromuscular anorectal dysfunction,” formerly called encopresis, certainly still exists, renamed functional fecal incontinence (FFI). You have surely cared for many children with FFI over the years, mostly the 80% retentive (constipated) type but newer information may make your management more successful!
The first step in managing FFI is detecting it. This may seem easy as we get a whiff of its presence, even if the child and parents are unaware because of habituation to the odor. Children lose sensation from rectal dilation by the stool mass and become unaware of leakage. But they also are ashamed of and deny “accidents,” hide soiled underwear, and keep distance from parents and peers. Our physical exam may reveal an abdominal mass or perianal stool. While there, check the anal wink, anus placement, lower spine integrity, and ankle reflexes for rare neurological causes. A rectal exam is not required if the story fits but, if not, may show a dilated rectal vault and hard mass. Blood work, x-ray, ultrasound, barium enemas, or manometry are rarely indicated.
Instead of counting on expressed concern, we should routinely ask children about large, painful, or infrequent poops. There are even Rome IV criteria for constipation – at least two of the following without organic pathology and with duration of at least 1 month: less than 2 defecations/week, a history of hard or painful stools, retentive posturing or excessive stool retention, large stools blocking the toilet, large rectal fecal mass, or at least 1 episode of incontinence/week. Our history should request this but parents are often unaware of their child’s patterns except for that blocked toilet!
Other actionable history includes struggles over toilet training, early anal fissure or painful stools, a history of “straining”, crying, or crossing legs (attempts to withhold), short stature and/or diarrhea (possible celiac disease), abdominal pain, poor appetite, or a diet high in milk products or low in fiber. Family history may suggest rare organic causes such as hypothyroidism, Hirschsprung disease, multiple endocrine neoplasia type 2, or celiac disease, but also constipation (in 55%). After the newborn period (imperforate anus or meconium ileus), 95% of constipation is functional.
While constipation has a worldwide prevalence of 9.5%, low exercise and low-fiber diet are particularly American. Low total food intake as a cause is uncommon in the United States but another reason to screen for food insecurity.
Patterns of behavior can predispose to constipation and FFI. For the child, oppositionality, social anxiety, depression, or eating disorders may interfere with sufficient stool frequency and relaxation needed to fully evacuate at home, daycare, or school. Query every child with ADHD about stool patterns as inattention to urge plus impatience with completing defection (and ODD) are common disorders leading to FFI. Parents who are overly demanding, intrusive, rushing, irritable, anxious, or obsessive may also make routine toileting stressful. When caregivers are neglectful, fail to maintain routines for eating, or ignore dirty diapers, toilet training is more likely to fail and constipation ensue.
Clean out and maintenance using medication are needed for FFI, but child and family behavior change are also critical; the combination has proven more successful. Both the child and parents need clear a explanation of how constipation develops from withholding, regardless of the reason (pain, anxiety, conflict, diet), leading to larger stools more difficult to pass as water is absorbed in the colon. The large mass stretches the bowel so that sensation and strength for motility is impaired and softer stool leaks by and out the rectum unbeknownst to the child. I find drawing “the rock of poop” in a dilated thin walled colon with nerves sparse and “liquid stool sneaking by” compared to a “muscular” colon with soft poop animates and objectifies this explanation. Making it clear that leaking is involuntary is key to having the parent and child directly forgive each other for prior anger, blaming, sneaking, or punishment. While the school-aged child needs to be in charge of toileting, resolving the conflict is essential.
The critical next step is cleaning out “the rocks,” which should only rarely be omitted. Polyethylene glycol (PEG, for example, Miralax) has the best evidence, tastes better (without electrolytes), and dosing 1-1.5 g/kg per day premixed in 10 mL/kg fluid of the child’s choice kept cold and swallowed within 30 minutes daily for 3-6 days until feces have no more chunks. This process disimpacts 95% of the time. Reassure parents of the long-term safety despite the warning on the label that it is intended for adult users. Lactulose or sorbitol (1 mL/kg, once or twice daily), magnesium hydroxide, bisacodyl, or senna are long second choices. Only if these fail should mineral oil 15-30 mL per year of age, up to 240 mL per day be used and then not in infants or if there is aspiration risk. While enemas (mineral oil, sodium phosphate, or saline) and p.o. PEG are equally effective, enemas are very intrusive and unnecessary. There is insufficient evidence for probiotics, prebiotics, or synbiotics.
It is crucial to be honest with the child and parents that clean out can be uncomfortable as cramping or leaking may occur. Thus, starting PEG after school on Friday and being prepared to stay home Monday (if rocks are still emerging) may be needed to avoid accidents.
After clean out, maintenance using daily PEG 0.4-0.8 g/kg per day (best) or lactulose needs to be continued for 2-6 or even 12 months to prevent relapse as the bowel recovers. Bowels need to produce 1-2 soft stools per day for 1 month before considering weaning off PEG. High-fiber (age of child plus 5-10 g/day) diet perpetually is more acceptable if we suggest Frosted Mini-Wheats, Fig Newtons, cookies or muffins baked with wheat bran, popcorn, or fruits with “p” in the name (for example, prunes, pears, apricots), Raisin Bran, or methylcellulose in juice or Popsicles, wafers (with jelly or frosting), or tablets. Infant diet can include brown sugar, or prune/apple/pear juice (Karo is no longer reliably osmotic). Diet needs to include 32-64 ounces of nonmilk fluids, although this will not serve as treatment alone. Limit cow milk to 16 oz. or consider eliminating it entirely if other treatments fail as cow milk is constipating.
Maintenance also requires coaching the child to commence “exercises” to “strengthen the bowel.” These consist of sitting with feet supported to elevate at the hip for 10 minutes by a timer after meals 2-3 times per day and pushing. Entertainment such as music, books, small toys, or a noncompetitive video game and/or rewards of cash, tokens, or treats may lighten the routine. These “exercises” need to be continued indefinitely and monitored with a stool diary. Monthly check-ins are essential to adherence and success, especially in the first 3-4 months, to address any relapses.
While constipation has consequences besides FFI: physical (abdominal pain, anal fissure, rectal prolapse, enuresis, UTI, vesicoureteral reflux, and upper urinary tract dilatation, poor appetite, or poor growth), emotional problems (lability, depression, anxiety, aggression, and low self-esteem), social problems (peer humiliation, teasing, rejection, parent upset, anger, shaming, and punishment), and school absence, we can be supportive and effective coaches for this chronic condition.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.
Wishful thinking. “Repeated involuntary passage of stool in the underwear after the acquisition of toileting skills (typically > 4 years of age) in the absence of overt neuromuscular anorectal dysfunction,” formerly called encopresis, certainly still exists, renamed functional fecal incontinence (FFI). You have surely cared for many children with FFI over the years, mostly the 80% retentive (constipated) type but newer information may make your management more successful!
The first step in managing FFI is detecting it. This may seem easy as we get a whiff of its presence, even if the child and parents are unaware because of habituation to the odor. Children lose sensation from rectal dilation by the stool mass and become unaware of leakage. But they also are ashamed of and deny “accidents,” hide soiled underwear, and keep distance from parents and peers. Our physical exam may reveal an abdominal mass or perianal stool. While there, check the anal wink, anus placement, lower spine integrity, and ankle reflexes for rare neurological causes. A rectal exam is not required if the story fits but, if not, may show a dilated rectal vault and hard mass. Blood work, x-ray, ultrasound, barium enemas, or manometry are rarely indicated.
Instead of counting on expressed concern, we should routinely ask children about large, painful, or infrequent poops. There are even Rome IV criteria for constipation – at least two of the following without organic pathology and with duration of at least 1 month: less than 2 defecations/week, a history of hard or painful stools, retentive posturing or excessive stool retention, large stools blocking the toilet, large rectal fecal mass, or at least 1 episode of incontinence/week. Our history should request this but parents are often unaware of their child’s patterns except for that blocked toilet!
Other actionable history includes struggles over toilet training, early anal fissure or painful stools, a history of “straining”, crying, or crossing legs (attempts to withhold), short stature and/or diarrhea (possible celiac disease), abdominal pain, poor appetite, or a diet high in milk products or low in fiber. Family history may suggest rare organic causes such as hypothyroidism, Hirschsprung disease, multiple endocrine neoplasia type 2, or celiac disease, but also constipation (in 55%). After the newborn period (imperforate anus or meconium ileus), 95% of constipation is functional.
While constipation has a worldwide prevalence of 9.5%, low exercise and low-fiber diet are particularly American. Low total food intake as a cause is uncommon in the United States but another reason to screen for food insecurity.
Patterns of behavior can predispose to constipation and FFI. For the child, oppositionality, social anxiety, depression, or eating disorders may interfere with sufficient stool frequency and relaxation needed to fully evacuate at home, daycare, or school. Query every child with ADHD about stool patterns as inattention to urge plus impatience with completing defection (and ODD) are common disorders leading to FFI. Parents who are overly demanding, intrusive, rushing, irritable, anxious, or obsessive may also make routine toileting stressful. When caregivers are neglectful, fail to maintain routines for eating, or ignore dirty diapers, toilet training is more likely to fail and constipation ensue.
Clean out and maintenance using medication are needed for FFI, but child and family behavior change are also critical; the combination has proven more successful. Both the child and parents need clear a explanation of how constipation develops from withholding, regardless of the reason (pain, anxiety, conflict, diet), leading to larger stools more difficult to pass as water is absorbed in the colon. The large mass stretches the bowel so that sensation and strength for motility is impaired and softer stool leaks by and out the rectum unbeknownst to the child. I find drawing “the rock of poop” in a dilated thin walled colon with nerves sparse and “liquid stool sneaking by” compared to a “muscular” colon with soft poop animates and objectifies this explanation. Making it clear that leaking is involuntary is key to having the parent and child directly forgive each other for prior anger, blaming, sneaking, or punishment. While the school-aged child needs to be in charge of toileting, resolving the conflict is essential.
The critical next step is cleaning out “the rocks,” which should only rarely be omitted. Polyethylene glycol (PEG, for example, Miralax) has the best evidence, tastes better (without electrolytes), and dosing 1-1.5 g/kg per day premixed in 10 mL/kg fluid of the child’s choice kept cold and swallowed within 30 minutes daily for 3-6 days until feces have no more chunks. This process disimpacts 95% of the time. Reassure parents of the long-term safety despite the warning on the label that it is intended for adult users. Lactulose or sorbitol (1 mL/kg, once or twice daily), magnesium hydroxide, bisacodyl, or senna are long second choices. Only if these fail should mineral oil 15-30 mL per year of age, up to 240 mL per day be used and then not in infants or if there is aspiration risk. While enemas (mineral oil, sodium phosphate, or saline) and p.o. PEG are equally effective, enemas are very intrusive and unnecessary. There is insufficient evidence for probiotics, prebiotics, or synbiotics.
It is crucial to be honest with the child and parents that clean out can be uncomfortable as cramping or leaking may occur. Thus, starting PEG after school on Friday and being prepared to stay home Monday (if rocks are still emerging) may be needed to avoid accidents.
After clean out, maintenance using daily PEG 0.4-0.8 g/kg per day (best) or lactulose needs to be continued for 2-6 or even 12 months to prevent relapse as the bowel recovers. Bowels need to produce 1-2 soft stools per day for 1 month before considering weaning off PEG. High-fiber (age of child plus 5-10 g/day) diet perpetually is more acceptable if we suggest Frosted Mini-Wheats, Fig Newtons, cookies or muffins baked with wheat bran, popcorn, or fruits with “p” in the name (for example, prunes, pears, apricots), Raisin Bran, or methylcellulose in juice or Popsicles, wafers (with jelly or frosting), or tablets. Infant diet can include brown sugar, or prune/apple/pear juice (Karo is no longer reliably osmotic). Diet needs to include 32-64 ounces of nonmilk fluids, although this will not serve as treatment alone. Limit cow milk to 16 oz. or consider eliminating it entirely if other treatments fail as cow milk is constipating.
Maintenance also requires coaching the child to commence “exercises” to “strengthen the bowel.” These consist of sitting with feet supported to elevate at the hip for 10 minutes by a timer after meals 2-3 times per day and pushing. Entertainment such as music, books, small toys, or a noncompetitive video game and/or rewards of cash, tokens, or treats may lighten the routine. These “exercises” need to be continued indefinitely and monitored with a stool diary. Monthly check-ins are essential to adherence and success, especially in the first 3-4 months, to address any relapses.
While constipation has consequences besides FFI: physical (abdominal pain, anal fissure, rectal prolapse, enuresis, UTI, vesicoureteral reflux, and upper urinary tract dilatation, poor appetite, or poor growth), emotional problems (lability, depression, anxiety, aggression, and low self-esteem), social problems (peer humiliation, teasing, rejection, parent upset, anger, shaming, and punishment), and school absence, we can be supportive and effective coaches for this chronic condition.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.