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Posted by Jodie
on 8/12/2008, 8:41 pm
124.181.241.162
My 10 month old son was diagnosed 3 weeks ago with Phelan-Mcdermid syndrome. Two days ago he seemed to have some seizures. they lasted about 5 seconds, his eyes were open and fixed, mouth open and screaming, arms and legs shaking a little. he had about 10 of these in 45 minutes, and then stopped. We took him to hospital, but only triage nurse witnessed them. Doctors not sure if they were actually seizures or not, as no one knows enough about the syndrome, even our geneticist. Our son did have a fever on and off and a virus, so they are not sure if it was linked to this or the syndrome, as the length of the "seizure" did not fit with febrile convulsions. Just wondering if any one else knows anything about this. As we have left the hospital still not knowing really what had happened. thanks.
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