Hi, I am joining the list because of recent changes I have seen in my 16 year old son. My son was born with many malformations in his brain including brain cysts, agenesis of corpus callosum, underdeveloped cerebellum, and more. His overall diagnosis was a rare syndrome called Linear Epidermal Nevus Syndrome. The CP term was never really used to describe him. He always had low muscle tone and poor motor control. His milestones were late but not terrible: sat at 9 months, walked at 18 months, although quality isn't good. He has an awkward gait and bad balance. He has ataxia and apraxia of speech. He talks but has trouble with long utterances so he keeps conversations short and looks to me if people ask him questions rather than answer because it is just too hard to organize the motor control needed to say what he wants. His maturity was fairly normal until late middle school, now we feel he has not been maturing at a regular rate as he entered high school. He is in the 10th grade but acts more like a middle schooler in many ways. He is smart and can pass some regular classes like high school Algebra and Biology but has learning disabilities that keep him from participating in all regular ed classes. Now, the recent changes... in the last year or so, he has been clenching his fists and bending his wrists the way you would expect someone with spastic CP in the arms to do it. Whenever he is "at rest," he does this. He isn't locked in this way, he freely can open them and use his hands but always holds them this way if he isn't using them and he never used to do this before. I don't know why this new symptom has occurred and it is getting worse. It used to just be the fists and now it is the fists and wrists. He looks like he has CP in his arms. BTW, he also started having seizures at 14. Anyone have any thoughts on this? Is this a big concern I should see a doctor about? Is there anything one can do to help him not clench at rest?
Thanks - Lynne
Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.
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