Caregiver survey of pharmacotherapy to treat attention deficit/hyperactivity disorder in individuals with Williams syndrome.
Methylphenidate calms ADHD in Williams syndrome yet brings more irritability and tooth trouble, so monitor closely.
01Research in Context
What this study did
Fahmie et al. (2013) sent a short survey to caregivers of people with Williams syndrome. They asked if the person takes ADHD medicine and what side effects happen.
The survey listed common drugs like methylphenidate. Caregivers checked boxes for problems such as irritability, sleep trouble, or tooth issues.
What they found
Most families said the drug helped attention a little. Yet many also reported more irritability and dental problems than seen in typical kids on the same drug.
Heart check-ups were advised because a few cases had rhythm worries. Overall, benefits were mild but side effects were louder in this syndrome.
How this fits with other research
Akefeldt (2009) used the same survey trick in Prader-Willi syndrome. That paper flagged water overload and low sodium on psychiatric meds, showing rare syndromes need special watch lists.
Robertson et al. (2013) also asked adults to fill out forms about sensory issues. Their big correlation supports the idea that surveys can catch hidden traits, just like A et al. caught hidden side effects.
Chen et al. (2013) tested a non-drug fix for preschoolers with delay. Together these 2013 papers remind you: measure first, then choose pill or training.
Why it matters
If you serve a client with Williams syndrome and ADHD, methylphenidate can work, but plan for extra irritability and schedule dental checks. Track mood and heart data each visit. Share the caregiver survey template so families know which red flags to report early.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a quick dental and mood check to your data sheet before the first dose and each week after.
02At a glance
03Original abstract
Williams syndrome (WS) is a genetic condition characterized by a unique neurocognitive and behavioral profile, including increased incidence of attention deficit/hyperactivity disorder (ADHD). The purpose of the present study was to examine the perceived helpfulness and side effects of medications used to treat ADHD (methylphenidate class, amphetamine class, atomoxetine) in individuals with WS. This was accomplished with a survey of parents/caregivers of individuals with WS through the Williams Syndrome Association. Five-hundred twelve (512) parents/caregivers responded to the survey regarding their child's/adult child's use of ADHD medications. Twenty-seven percent (27%) of the individuals had been prescribed a medication for ADHD, most commonly a methylphenidate class medication. OROS-methylphenidate was reported as the most helpful methylphenidate class formulation, with 74% reporting it at least somewhat helpful. Survey participants reported similar side effects as typically developing controls, but to a greater degree. Irritability was the most commonly endorsed side effect of an ADHD medication (38%). Individuals reported use of stimulant medications in the presence and absence of underlying cardiac conditions, with 56% of ADHD medication users reporting supravalvular aortic stenosis, 36% pulmonary artery stenosis, and 25% systemic hypertension. Individuals taking ADHD medications were more likely to report dental problems (p=0.004). Additional studies are needed to further investigate these findings and examine short-versus long-acting stimulant medications and dosage effects.
Research in developmental disabilities, 2013 · doi:10.1016/j.ridd.2013.02.015