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Challenging Case Blog

Viewpoints from the interdisciplinary leaders in optimal developmental and behavioral health for all children.

Tuesday, May 5, 2020


Heidi is an almost 6-year-old girl presenting to your primary care office to establish care due to a change in insurance status. You review her prior medical records before seeing her. 

She was diagnosed with an autism spectrum disorder (ASD) when she was 25 months old. Her parents were initially concerned about language delay. Through a comprehensive evaluation by a Developmental-Behavioral Pediatrician and a child psychologist, including administration of the Bayley Scales of Infant and Toddler Development and the Autism Diagnostic Observation Schedule (ADOS), she was diagnosed with ASD. Her cognitive skills were reported to be within the average range.  Soon after the diagnosis, she began receiving 20 hours of Applied Behavioral Analysis (ABA) per week, as well as music therapy, occupational therapy, and a toddler playgroup through Early Intervention. Four months after the initial diagnosis her parents reported that she had started making small improvements in her behavior, used more eye contact, and seemed more socially engaged. Approximately one year after the diagnosis, she was receiving six hours of ABA per week in addition to starting preschool with an Individualized Education Program.  She reportedly continued to show progress with social communication and pretend play skills.  

At the age of 3 years, 8 months, neuropsychological testing was completed at her parent’s request and her cognitive skills and adaptive skills were reported to be within the average range. She continued to meet the diagnostic criteria for autism spectrum disorder given her challenges with social awareness, communication, delayed play skills, decreased flexibility, and tendency towards subtle self-direction. She continued to receive speech/language therapy and attended an integrated preschool program within the school district due her social and communication challenges.  She also received ABA four hours weekly at home.

During your first visit with Heidi, her parents report that she has continued to make progress in all areas, including social skills. She can engage in imaginary play with her friends, ask strangers questions, comprehend the perspective of others, and is no longer “rigid”.  She is not receiving services outside of school and is only receiving once weekly speech/language therapy in school. Her parents no longer believe that she meets the criteria for autism spectrum disorder, and they are interested in further evaluation.  Her parents ask if it is possible to “lose” the diagnosis of autism spectrum disorder.  They also want to know if there are other things to be concerned about for her future. How do you respond?

Thursday, April 2, 2020

Carl is a 12-year-old boy with neurologic malformation, ataxia, bilateral strabismus with presumed residual visual impairment after surgical repair, and intellectual disability. He was referred to developmental-behavioral pediatrics for evaluation of possible autism spectrum disorder.

Carl had a benign prenatal course and was born via spontaneous vaginal delivery at term. Bilateral strabismus was noted at birth. Despite surgery to address strabismus, Carl continues to be unable to raise his eyes above midline and his visual status including visual acuity, depth perception, color perception, and visual fields, is unclear. A recent auditory brainstem response evaluation was consistent with normal hearing.  Multiple variants of undetermined significance were reported on chromosomal microarray.  MRI of the brain demonstrated multiple malformations in the brainstem and posterior fossa. Electroencephalogram was without evidence of seizure activity.  There is no family history of genetic disorders, brain malformation, or learning/cognitive disability.

Carl was not able to sit independently until 2 years of age and did not walk until 5 years.  Now, he can walk short distances by himself but is often unsteady on his feet. He uses a wheelchair but does not propel himself despite a physical therapy assessment indicating that he has adequate strength to do so. Carl spoke his first word at 5 years and parents report that he currently uses approximately 50 words spontaneously and appropriately.    His speech is difficult to understand due to articulation errors.  He can identify colors and numbers but has not mastered concepts of size and comparison.  Standard scores for the Conceptual, Social, and Practical domains as well as the General Adaptive Composite were in the mid 50's on the Adaptive Behavior Assessment System-3 as reported by parents.

At home, Carl spends much of this time watching videos on his iPad in his bedroom.  At school, he tends to separate himself from others on the playground after lunch.  Parents believe this to be due to communication difficulties and mobility limitations. Parents report that when he likes another classmate or family member, he will stay in the same room as that individual but will not try to interact. Teachers report that when a well-liked classmate sits near Carl, he will smile and say the classmate's name. He will not attempt to initiate or participate in conversation.  A picture exchange communication system was introduced at school due to difficulties understanding his speech.  Attempts have also been made to train him to use a keyboard to communicate.  Carl has demonstrated limited interest in using either system.   He has several repetitive behaviors such as hand-flapping, body rocking, and rubbing his nose with a specific spoon.  Repetitive, non-purposeful vocalizations are reported at home and at school.  Carl requires assistance with toileting and bathing due to refusal to complete the tasks otherwise.  It is common for Carl to cover his ears in response to hearing specific sounds such as fire alarms and emergency sirens.    

The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), Module 1 was administered to assess for behaviors consistent with a diagnosis of autism spectrum disorder.  Carl scored within the severe range of symptoms and was diagnosed with autism spectrum disorder.   Recommendations were made for completion of a functional vision assessment and implementation of home- and school-based ABA programs. Additionally, further testing with an assessment developed for children with low language abilities was recommended to clarify his nonverbal cognitive abilities.  What else would you consider when making recommendations for Carl's care?

Tuesday, February 11, 2020

Thomas is a 13-year-old male with Autism Spectrum Disorder, ADHD, Generalized Anxiety Disorder, Separation Anxiety Disorder, and Major Depressive Disorder presents for follow-up to his developmental and behavioral pediatrician (DBP).  His mother describes an increase in symptoms of anxiety and depression for the last six weeks, accompanied by suicidal ideation and thoughts of self-mutilation.

Before this increase in symptoms, he had been doing well for the last several months with the exception of increasing weight gain, and Abilify was decreased from 5 mg to 2.5 mg at his last visit.  Other medications at that time included Zoloft 100 mg twice daily, Focalin XR 40 mg every morning and Focalin 5 mg every night. Without seeking the guidance of our Developmental and Behavioral Pediatrics clinic, mother increased his Zoloft to 150 mg each morning and continued 100 mg each evening due to worsening anxiety and depression. 

Religion is very important to Thomas and his family.  He acknowledges that he does not want to die and feels badly because "suicide is against our religion." 

Helping Thomas receive appropriate care has been a challenge.  He was diagnosed with ADHD and Asperger's Disorder at age five.  Thomas is home schooled and is very attached to his mother.  His parents have very different parenting styles, with his mother being more permissive and his father more authoritarian.  At the time of initial diagnosis, Behavioral Health Services (BHS) in Thomas' community, which is about an hour away from the DBP, were limited to older children and he was followed by DBP for ADHD medication management.  At the age of 11, he expressed passive suicidal ideation and described that he imagined his mother as "the devil with fire coming out of her eyes" when she corrected him.  He was evaluated by BHS, diagnosed with Anxiety Disorder, and started on Lexapro.  BHS linked to the DBP were out of network for his insurance. The family was unable to pay out of pocket, so care was subsequently transferred to DBP clinic, which was in network.  Soon after, Thomas developed auditory hallucinations, and Abilify was added after consultation with BHS. 

Over the last few years, Thomas's symptoms have waxed and waned.  He did well for a short time then again developed auditory hallucinations, worsening symptoms of anxiety and depression, and increasing somatic symptoms including vomiting and penile pain.  Medications were adjusted with input from BHS and further attempts were made to link him to local BHS but were unsuccessful. With his current concerns of suicidal ideation and self-mutilation, what would be your next steps?

Tuesday, December 31, 2019


Susie is a 10-year-old girl who is followed by a developmental-behavioral pediatrician for attention-deficit/hyperactivity disorder (ADHD), combined type and challenging behaviors. Susie has been treated with extended-release methylphenidate HCl 36 mg daily and extended-release guanfacine 1 mg daily for the past year. Susie attended an evidence-based summer treatment program for ADHD for 8 weeks over the summer, and the family has continued to attend monthly behavioral therapy visits with a local child psychologist.
Parents report that, until recently, Susie's symptoms of ADHD were well controlled. Susie had a positive start to the school year but has had increasing difficulties over the past month. Specifically, Susie's classroom teacher has communicated that she is having difficulty maintaining attention, is easily distracted, and is missing several homework assignments. While obtaining a careful interim history, Susie's parents report that there have not been any changes or new stresses in the home or school environments. They were pleased with the behavioral guidance provided during the summer treatment program and have continued to use those strategies.

Further discussion revealed that parents noticed a change in the appearance of Susie's methylphenidate tablets when the prescription was last filled. Although the previous prescriptions were filled with oblong, white tablets, the most recent prescription was filled with round, white tablets. Susie's parents contacted the pharmacy and were told that Susie's prescription was filled with “the same thing as before.” The pharmacist explained that the tablets looked different because the manufacturer had changed in order to comply with the preferences of Susie's insurance provider. What would be your next steps in Susie's care?

Friday, November 22, 2019

CASE: Leo is a 26-month-old boy who you are seeing for an urgent care visit due to “sleep difficulty,” particularly sleep onset. Since age 1, he screams, hits, and kicks his mother every day, starting after she gets home from work at 5 PM (or before the family's dinnertime on her days off) and escalating over the course of the evening until he “wears himself out” and falls asleep in a crib in his own room around 9 to 10 PM Once asleep, he sleeps well through the night and wakes easily around 7 AM in a pleasant mood; his mother leaves for work soon after he awakens. He naps after lunch for 2 to 3 hours on weekdays at an in-home child care with 1 to 2 adult caregivers and 5 other children aged 0 to 5 years. He refuses to nap at home.

Leo goes to bed easily when his father puts him to bed if his mother is not at home, but his mother feels that evenings are the only time she can spend with Leo, and so, she tries to put him to bed most nights. However, because of Leo's behaviors at bedtime with her, she feels inadequate, depressed, and guilty; when she tries to disengage or allow her husband to help, Leo screams, “Mommy, mommy!” and tries to gain access to her and resists his father putting him to bed until his mother returns. Both parents worry that “he would not grow out of this,” and his mother now avoids coming home from work for fear of Leo's behavior. Both parents feel that this situation is causing marital strain.

Leo was born healthy at full-term and is an only child; pregnancy was complicated by hyperemesis gravidarum. Leo has been healthy and meeting developmental milestones. His parents describe his temperament as “like his father at that age,” “easy, but never able to self-soothe,” “intense” in his emotional reactions, persistent, “strong-willed and serious,” and “shy and observant, withdrawn at first and then getting more pleasant after a while” in novel situations. Behaviorally, he engaged in noninjurious head-banging at home when upset between 12 and 15 months; bit children a few times at child care between 20 and 24 months; and lately refuses to share or will push other children at child care every few weeks. His parents recently read a book about parenting “spirited” children but did not find it helpful. What would you do next?