Medication Guide for Families

There are several key things to remember in the consideration of medication for children with I/DD.

• The main therapies in I/DD are:
  • Educational
  • Behavioral
  • Speech and Language
  • Environmental/Structural
• Medications cost money and time through co-pays, doctor and lab visits.
• There are almost never absolute indications for psychiatric medication in the context of I/DD
  • There are certainly times for strong recommendations for medication use.
  • There are certainly times when medication is not appropriate.
  • Medicines have side effects:
    • While helping with “behavior” might be the goal, the most common types of side effects with psychiatric medication are behavioral side effects. The most common behavioral side effects are agitation, irritability, restlessness, and swings in emotions. In addition, common physical side effects include insomnia, weight gain/loss, headaches, and constipation.

It is important to state that medications cannot cure and do not alter the core features of any Intellectual Developmental Disability. For example, the social communication challenges, the repetitive behavior, and the circumscribed interest areas cannot be meaningfully impacted by medication.

When parents are considering the use of medication in a child with I/DD, the parents are weighing many factors including whether the behavioral challenges or insomnia are negatively impacting the child’s learning and social relationships. In addition, parents are weighting:

• Family Stress
• Physical Safety of the individual with IDD and/or others
  • How bothersome the symptoms from any of these realms seem to the family member themselves versus others? As the young person grows older and moves toward more independence this question takes on added importance. The values of the parents, guardians, and the young person have a significant impact on how this question is answered.

When parents are wrestling with these medication decisions, they are often trying to understand if their child’s behavioral challenges are due to unrealistic environment demands that need to be addressed first. An example of this is a four year old boy with Autism Spectrum Disorder and severe auditory sensory sensitivity who becomes emotionally overwhelmed and distressed daily in a large and loud cafeteria. He begins to refuse school. It is very possible that adjustments in expectations, use of noise reducing head phones, and graded exposure to distressing environments will be sufficient to help this young child.

In other situations, the behavioral challenges persist despite the best efforts and reasonable accommodations. An example is an 11 year old girl with Trisomy 21 and mild intellectual disability who is profoundly hyperactive and impulsive in school and home settings with reasonable supports and behavioral incentive programs. Her teachers and parents agree that her inability to sit still and attend in school impact her learning potential and her potential to make friends even among peers with similar cognitive function.

Behavioral challenges in young people with I/DD can be worsened by:

• Communication challenges/delays
• Unrecognized physical discomfort/pain/distress (e.g. chronic constipation)
• Insomnia

Sometimes behavioral challenges in youth with I/DD are related to an unrecognized or untreated mental health diagnosis such as:

• ADHD
• Anxiety Disorder Depressive Disorder
• Bipolar Affective Disorder,
• Psychotic Disorder (much less common)
• Tic Disorder (e.g. Tourette syndrome)

It is quite challenging to diagnose mental health disorders when children have an I/DD. Due to this challenge, it is often the child’s level of distress, impairment, or inability to function in school, home, or community that sparks the consideration of symptom treatment. The parents and prescribing clinicians can use a developmental lens and consider whether the severity of the symptoms are notably beyond the expectations for a child at a similar cognitive or language developmental level. We would expect a six year old with an intellectual disability to be more active than a typically developing peer so the parent and prescribing clinician must consider how different the symptoms are from what is expected and how much impairment/distress is being experienced.

A critical question for the parents and prescribing clinicians is:
Given the presenting symptoms and characteristics of this child, do the potential benefits of a medication trial outweigh the potential risks?

Some areas that could be positively affected by medication treatment:

• Learning
  • Attention to less preferred tasks/ work persistence
  • Participation
    • Anxiety
    • Distractibility
    • Motor hyperactivity
  • Chronic Sleep Deprivation
• Social Functioning
  • Impulsive verbal or physical responses
    • Hitting to express frustration
    • Negative attention seeking with verbal responses leading to more social difficulty
  • Social avoidance related to severe anxiety about social judgement

Here are a few key symptom domains where medication MAY make an impact:

• Impulsivity/Hyperactivity/Distractibility
• Anxiety/Fearfulness/Avoidance
• Severe Agitation/Aggression/Emotional Irritability
• Sleep Problems
• Tics
• Depression
• Mania
• Psychosis

Here are a few key symptom domains where medication will NOT make a direct impact:

• Poor Social Skills
• Slow learning or cognitive function
• Language Delay
• Oppositional Behavior/Refusal to follow directions
• Strong refusal to transition off of a circumscribed interest area (ex. A child who will not stop watching videos about dinosaurs for bedtime routine)

Irritability is both a potential symptom to target with psychiatric medications and a potential side effect of psychiatric medications. Since irritability can be a side effect of the psychiatric medications, a systematic evaluation of the causes of irritability should be taken before prescribing. Some areas to consider in this systemic review are:

• Environmental/ psychosocial stressors (ex. moves, changes in school, bullying, divorce, new teacher, new worker)
• Challenges regulating emotions
• Sleep problems
• Other medication side effects
• Physical discomfort (ex. dental pain, constipation)
• Communication challenges and frustrations
• Difficulty making sense of experiences (ex. social expectations, loss of a pet)

If antipsychotics are considered to treat the symptom of irritability, they should be reserved for the most extreme situations and the following questions should be asked:

• Is there an on-going, systematic review of what could be causing the irritability?
• Are appropriate behavioral/other therapies in place or being sought?
• How unsafe is the situation for the child or others?
• Are environmental/structural considerations being made to improve safety? (ex. supervision to prevent injury to self/others, safe calm down spaces)
• How distressed is the child/family by the events?
• How is the mental health of family being affected?
• Could the intervention significantly improve the child’s access to school/community?

At least 25% of children on antipsychotics will gain significant weight on antipsychotics so ongoing metabolic monitoring is essential. This includes:

• Weight, Height, Abdominal Circumference, Body Mass Index measurements
• Periodically measuring cholesterol, glucose

Other monitoring may include

• Measuring blood cell counts
• Measuring liver function
• Measuring heart rhythm

Periodically, given increasing age, development, behavioral treatment withdrawal trials must be considered.

Children with I/DD are vulnerable to being prescribed multiple psychiatric medications including medications in the same class or type of medication. This increases risk of side effects as well as additional burdens to families in the form of co-pays, doctor and lab visits, and increased likelihood of medication errors. Families can consult with their prescribing clinician and pharmacists with questions and concerns about the use of multiple medications.

• The decision to use medication with children with I/DD is complex.
• There are limited studies in children with I/DD and Autism Spectrum Disorder to guide us.
• The main treatments are non-medical ones and should be tried first.
• Parents should know what medicines are being chosen and why.
• Parents should have a detailed risk/benefit conversation with your child’s prescriber.
• Parents should know monitoring needs especially for antipsychotics.
• Parents should ask about expectations and timelines for improvement including a timeline for medication removal. It is good to keep asking over time.
• The use of multiple psychiatric medications should be limited.

Big Red Safety Toolkit

http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf

Autism Speaks Medication Decision Making Guide

https://www.autismspeaks.org/sites/default/files/2018-08/Medication%20Decision%20Aid.pdf

General Tips about Healthcare in IDD context for caregivers

https://iddtoolkit.vkcsites.org/

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Dr. Rob Christian

We thank Dr. Rob Christian at the Carolina Institute for Developmental Disabilities for the development of this material.

Rob Christian, MD, joined Carolina Institute for Developmental Disabilities in 2009 and is an assistant professor of psychiatry and pediatrics in the UNC School of Medicine. Dr. Christian graduated from the UNC School of Medicine and did his postgraduate training at The Brown University Triple Board Program, which is a combined training program in General Pediatrics, Adult Psychiatry, and Child/Adolescent Psychiatry.