Guest guest Posted November 20, 2006 Report Posted November 20, 2006 Hi Gretchen.. Gavin has those mild essential tremors too, most evident when he tries to colour etc. Because of them his neurologist suggested he has Roussy-Levy syndrome, a clinical variant of 1A. Interesting though that his foot weakness without high arches etc. is considered more of a 'type 2' presentation. There seems to be so much symptom overlap across CMT. They don't want to give him anything for them, as the medications are a bit of a sledge hammer in children. Our latest challenge is more weakness in his chest and back muscles, causing more fatigue while he tries to hold himself in a proper posture at school. His feet and tendons have been doing great, though, all of a sudden he has no problems with his achilles tendons. All of the exercises may be finally helping. He is very happy to not be sleeping in the AFOs any longer! We are thrilled to be expecting a second child now but anxiously awaiting the prenatal tests. The geneticist estimated our chances of a second spontaneous mutation for CMT at 1%. Take care and thanks for the fabulous site Cheers Sally Quote
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