Guest guest Posted September 17, 2005 Report Share Posted September 17, 2005 Thanks Gretchen, Heidi, , Jeff, and Sally. You have already been an amazing group of people and a great support. Gretchen, How old were you when you were diagnosed? Sally, my son sometimes crawls up the steep steps and comes down backwards. His AFO made a hugh improvement navigating the stairs with a railing and has aloud him Independence. Maybe Gavin's new AFOs will make a difference too. The backpack sounds like a perfect solution. Also has he had his hip's X-rayed? is being followed for mild hip dysplasia but never complains of hip pain only back pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 > Hi Tonya, > > We are not sure what type my son has and there is no history of CMT in our families. His NCV were 13 which is low, and his EMG revealed a demylinating form. I do know DS has extreemly low NCV. He has gene tested negative thus far. What are your son's presenting symptoms? > > > Hi His dad does have cmt so when I noticed he was tripping and falling alot, and his left foot turned outward. I had him reffered to a specialist they had him fitted for braces right away and ordered an emg. The guy who conducted the emg said there was findings consitent with severe cmt-1 and possible ds. The next step is to see a neurologist and have a dna test. His dad doesnt seem to have ds I'm trying to find out if its possible that he develop ds. > > > > > Quote Link to comment Share on other sites More sharing options...
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