Posted by: Stephanie Khio
In June 2026, the MED13L Foundation surveyed families about their children’s use of NSAIDs, including ibuprofen, following repeated reports of changes that appeared to extend beyond expected effects on fever or pain. While this small, family-reported survey cannot establish efficacy or causality, the responses provide an important signal that warrants systematic investigation.
17 families responded, including 16 whose children had received an NSAID. The children ranged from 2–19 years of age (12 male, 5 female).
Among the 16 children who received an NSAID:
- 7 families (44%) reported changes beyond fever or pain relief; 7 reported no additional changes and 2 were unsure.
- Reported changes most commonly included better sleep (5), fewer challenging behaviors (3), improved mood (3), and increased cognition (2). Improvements in speech, attention, and motor skills were each reported once.
- Notably, among families who subsequently stopped the NSAID, 4 reported that the observed improvements faded. This apparent on–off pattern is particularly intriguing and provides a hypothesis that can be tested prospectively.
- 12 of 16 children (75%) had no reported side effects. Four families reported stomach discomfort, increased irritability, or changes in sleep; three discontinued the medication.
These observations are not evidence that NSAIDs are an effective treatment for MED13L Syndrome. However, the consistency of certain family-reported changes and particularly reports of improvement followed by loss of benefit after discontinuation—raises an important research question. Understanding whether these observations reflect a true biological effect, differences in individual responses, or other factors could reveal new insights into MED13L biology and potentially identify therapeutic mechanisms worth pursuing.
The Foundation views these family observations as an opportunity to move from anecdotal reports toward rigorous, controlled research that can determine whether there is a reproducible biological and clinical signal.
This was a parent-reported survey, not a clinical study. It reflects observations made at home rather than measured clinical outcomes, and it is not medical advice. Any decision about NSAIDs should be made with your child’s physician. The Foundation is sharing this data to help shape the research questions we bring to our scientific partners, and we thank every family who participated.
