Fragile X syndrome

Christopher Helton

Description

Title:

Fragile X syndrome

Creator:

Christopher Helton

Date:

4/21/2015

Text:

Hello list,

I'm looking for some tips regarding a pediatric case. Patient has Fragile X syndrome and is regularly hitting himself in the face and on the sides of the head. As he is getting older and stronger, this is becoming more of an issue. His face is bruised and he's knocked out a couple teeth.

He is working with therapy on behavior modification but for now it continues to be a problem. In the meantime the goal is to prevent him from causing serious harm to himself, while allowing him to keep his fingers free.

So far my attempts have been bilateral elbow immobilizers from Benik (E-600), with plenty of added padding. This prevented him from being able to reach his face, but it's causing skin irritation around his elbows. I've also given him Benik BD-88 gloves. I sewed a strip of silicone liner to the gloves that wraps around the MCP joints. These were to be used when he didn't have on the elbow immobilizers. However, he is still able to hit himself with his PIP joints.

I suggested the idea of a protective helmet and/or and custom face mask, but the parents do not like that idea. I've also suggested lightweight boxing/MMA type gloves ( <URL Redacted>, however the parents didn't like this idea either. His therapists have recommended the possibility of a straight jacket as the next step if we can't get this under control.

I'm curious if anyone has any creative ideas, or if you've come across a similar case.

Thanks in advance.

Chris


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Citation

Christopher Helton, “Fragile X syndrome,” Digital Resource Foundation for Orthotics and Prosthetics, accessed November 1, 2024, https://library.drfop.org/items/show/237173.