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Challenging Case Blog

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

Monday, November 5, 2018

Grant is a 13-year-old boy with trisomy 21 who presents with his mother for concerns regarding the emergence of several new disruptive behaviors. While he is verbal, he also communicates through an augmentative communication device. He currently attends a residential school. Over the past 2 months, he has begun spitting at the staff, engaging in self-injurious behaviors, placing his hands in his pants, and frequently talking about “pee and poop.” Notably, Grant has undergone several changes to his educational placement and medical health over the past several months. He recently transferred to his current residential school from another placement to be closer to his family, although this has meant that Grant was unable to work with his long-time aide. Additionally, most of the students at Grant's current school are significantly lower functioning than him, such that Grant is one of the few verbal children.

Approximately 3 months ago, Grant underwent significant dental work under anesthesia. Grant had previously taken an alpha-agonist for behavioral management, although he was weaned off this 4 months ago because of increasing somnolence increasing somnolence. Grant's recent behavioral challenges make performing community and home activities more challenging.

Grant's behavioral history is notable for a previous episode of behavioral and emotional challenges 18 months ago. This occurred in the setting of transitioning to a new classroom with higher academic and behavioral expectations and decreased time spent with his family. These behaviors had consisted of self-injurious behaviors and tantrums consisting of crying and social withdrawal. This was managed by increased behavioral and academic supports via trained teachers and aides, medication management, and optimizing his augmentative communication. After these interventions, Grant's behavioral and emotional functioning improved and remained stable until this current episode.

Grant's mother is concerned about what may be causing these emerging behaviors and wondering if any of the recent educational and medical stressors could be contributing. What do you do next?

Tuesday, September 25, 2018

Andrew is a 17-year-old male with Trisomy 21, commonly known as Down Syndrome (DS), and accompanying severe intellectual disability who presents to your primary care office with his father for the first time to establish care and assistance with transition. Andrew has a history of complete AV canal that was repaired as an infant as well as poorly controlled infantile spams. Currently, he struggles with constipation, esophageal strictures, medullary nephrocalcinosis, urinary retention, sleep dysregulation, G-tube dependency, and hip dysplasia. 

Andrew walked at 11-12 years of age. Currently, he ambulates on his feet at home and in a wheelchair out in the community. He is non-verbal but can imprecisely sign for “more” and understands a few words. Father reports his main concern is longstanding non-suicidal self-injury (NSSI) and aggression. His self-injury consists of head banging against hard objects such as concrete floors and biting or scratching himself to the point of bleeding. Over the past 13 years, he has been prescribed over 10 different psychotropic medications, including various typical and atypical antipsychotics, selective serotonin reuptake inhibitors, benzodiazepines, mood stabilizers, and alpha agonists, all of which were discontinued due to the perception of undesirable side effects or lack of efficacy. His current medications include aripiprazole, olanzapine, levetiracetam, clorazepate, and trazodone. To rule out causes of irritability, you order a brain and spine MRI, metabolic testing (for causes of NSSI such as Lesch-Nyhan), an autoimmune work-up (for causes of pain or inflammation such as juvenile idiopathic arthritis), and hearing/vision testing, which are all normal. Prior testing by sub-specialists (he is followed by Gastroenterology, Sleep Medicine, Orthopedics, Nephrology, Neurology, Cardiology and Psychiatry) included normal renal ultrasound and no clear sources of gastrointestinal pain. However, key providers are spread amongst multiple institutions and do not regularly communicate.

Andrew lives with his parents who are highly educated and very dedicated to his health and wellness. Mother travels frequently for work and father is Andrew’s full time caregiver. Despite remaining ostensibly positive, father reports significant caregiver burnout and fatigue. 

Over the next several months, Andrew continues to experience worsening NSSI necessitating medication changes despite active involvement in ABA therapy. During this time, he presents to the emergency room multiple times for irritability and self-injury. On exam, he is aggressive, irritable, has bruises on his forehead and scratches on his skin, and has intermittent vertical gaze deviation that was noticeable to parents. The rest of his physical and neurological exam was unremarkable and revealed no asymmetry, clonus, hyperreflexia, or changes in muscle tone. While examining his extremities, joints and abdomen, there was no obvious source of pain.
What are your next steps? How would you support this family, both in the immediate management of his self-injury as well as long term care needs for this medically and behaviorally complex adolescent?

Tuesday, July 24, 2018

Sam is a 6-year-old boy with a diagnosis of autism spectrum disorder (ASD) who recently relocated and has an appointment with you, his new pediatric clinician to establish care. He was previously followed by a psychiatrist for two years for the additional diagnoses of insomnia, bipolar disorder, anxiety, Attention Deficit Hyperactivity Disorder and intellectual disability. He has tried and (apparently) failed multiple psychotropic trials including stimulants, non-stimulants, mood stabilizers, atypical antipsychotics and non-benzodiazepine hypnotics. He has a delayed sleep onset and frequent night awakenings each night for the past 3 months, where he “screams, cries and thrashes and can stay up for over an hour.” His behaviors are described as irritable, self-injurious and aggressive with no clear pattern of triggers according to mother. He is non-verbal and communicates by leading and rarely pointing. Patient’s current medication regimen includes clonidine 0.2mg at night, lorazepam 1.5 mg as needed at night, olanzapine 5mg twice daily and diphenhydramine as needed for sleep/agitation. Mother is concerned that he is developing a ‘tolerance’ to the regimen and wants to wean off some of the medications. Mother is struggling to take care of patient given his worsening behavior and body habitus (BMI>99% z=3.41).

There is a family history of depression, anxiety, bipolar disorder and autism. He has a 3-year old sister, who is also diagnosed with ASD, though she is not as severely impacted. Mother’s partner recently moved in along with two children of his own, ages 3 and 4. Sam attends a specialized school, where he receives behavior therapy and occupational therapy. He has undergone inpatient pediatric hospitalization twice, one for three weeks, one for six days,  for aggressive behavior and in both instances was discharged prior to  inpatient psychiatric placement due to lack of available beds.

Following urgent consultation with your local Developmental and Behavioral Pediatrician, a slight reduction was made in the lorazepam due to concerns about tolerance and side effects. However, within a week of this he was brought to the Emergency Department for continued self-injurious behavior and increased trouble with sleeping.  Mother voiced concerns about his safety in the home, particularly related to aggression towards his younger sister. He was admitted to the pediatric inpatient floor for observation, and medication adjustment (increasing olanzapine), which was initially helpful in improving behavior, but mostly behavioral/environmental strategies were used to soothe him, including frequent wagon rides through the hospital corridors.  

Despite patient being stable from the medical standpoint, Sam’s mother did not feel comfortable taking him home. Social work contacted local community mental health services, to pursue outpatient resources, respite care options and sought inpatient pediatric psychiatry. After several failed attempts to find placement, he remained in pediatric inpatient care for one and a half months with no acute medical interventions other than his oral medications.

He was finally accepted to the in-state pediatric psychiatric facility when a bed opened. During his week-long stay, he had further medication adjustments with decrease in olanzapine and optimization of his clonidine dose. During his psychiatric hospital stay, care coordination succeeded in arranging center-based applied behavior analysis (ABA) interventions and respite care and parent training for his family.  Sam began to show improvement in his overall agitation and aggression, requiring less clonazepam and his mother then maintained outpatient follow-up.

The day prior to discharge, you visit him in the hospital and a medical student asks you why he was in the hospital for so long? How would you answer her question?

Tuesday, June 26, 2018

Ryan is a 6-year-old child new to your primary care practice after relocating from out of state with his father and younger sister. Ryan's grandmother recently expressed concerns about Ryan's social skills and behavior. He was subsequently diagnosed by a developmental and behavioral pediatrician with autism spectrum disorder, global developmental delay, and attention deficit hyperactivity disorder. At your first visit with Ryan, his father provides the following history: When Ryan was 3 years old, he was living with his mother and infant sister while his father was serving his fourth tour of duty with the marines in Afghanistan. One night, while Ryan was sleeping in bed with his mother, she died suddenly from a pulmonary embolism. Ryan's father was then called home from Afghanistan to take care of the children.

Ryan's father explains that this was his first time serving as a primary caregiver for any prolonged period. He felt overwhelmed and unprepared, both cognitively and emotionally, to return from a combat zone and assume full-time, single-parent responsibilities. Ryan's father admitted knowing little about child development and had not had sustained interactions with his own children because of frequent deployments. He did not appreciate the delays and atypicalities in Ryan's development until he moved back home with his own mother and she expressed concerns. Ryan's father had his own psychological, emotional, and physical challenges from participating in active combat, including chronic pain in his shoulder from multiple gunshot wounds. Despite moving back home to be close to his family, Ryan's father admits feeling isolated and reports that “no one knows what it feels like.”

How would you provide unique support to Ryan and his family? What treatment modalities are particularly important to emphasize?

Tuesday, February 20, 2018

Aaron is an 11-year-old boy with Autism Spectrum Disorder (ASD), with cognitive and language skills in the above average range, whose parents have recently separated.  Aaron’s mother initiated the separation when she learned that Aaron’s father had maintained a relationship with a woman with whom he has a ten-year-old daughter.  When Aaron’s mother discovered this relationship, she demanded that Aaron’s father leave their home.

Aaron’s father has moved in with his long-term girlfriend and keeps in contact with Aaron by calling once a day.  Neither Aaron’s father nor mother has discussed the reason for their separation with Aaron.  So far, they have explained their separation by telling Aaron that they are “taking a break.” 

Aaron’s mother has been deeply hurt by Aaron’s father’s infidelity and does not want to reconcile with him. Aaron’s father recognizes this, but would like to continue to have a close relationship with his son.  He would also like Aaron to get to know his half-sister. 

Aaron’s mother seeks guidance regarding how to talk to Aaron about the separation and his father’s second family.  Given Aaron’s diagnosis of ASD she is particularly concerned about his ability to cope with this unexpected change in circumstances.  What is your advice?