Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi there! I had some questions about testing children for CMT.I was wondering at what age is a good time to get children tested and what are some of the procedures that are involved?I ask because I had to get alot of blood drawn and It would be some what painful to see my son go through that.(trust me I want to get him tested at any cost) Another question I have is ,I plan on recieving disability long term If I get approved for it and I go on medicare can my wife and son recieve those benefits too? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Testing a child definitively with the blood test will label the child. The records may be available to future insurance companies, who will find that or some other reason not to insure the child. My husband's doctor suggested a simple nerve conduction study on two muscles, If it is abnormal, our son probably has the disease but can avoid the label. Ellie Hood Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 , I don't think you need to worry about testing your son right now. If he starts to have trouble walking and you think its CMT related then get him tested. I had to just do what I could with my kids. That was taking life a day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 Gretchen, Thank you for replying. I meant Dejerine Sottas Disease. I can't figure out if this is a different type of CMT or if is just any of the types in a more severe degree.(I hope that makes sense). I understand that he has to have the same type that I have and that he could possible have it worse than I do. I'm not even sure which type I have, my neurologist diagnosed me and I asked her which type and she said that she wasn't sure cos i would need genetic testing to find that out and it wasn't covered by insurance and could be costly. I would assume (maybe wrongly) that I have a type 1 of some sort because of the NCV test. It was I believe 22. I am going to look for a new neurologist as I didn't like her. She said basically " You have CMT, live with it. " nothing else, no advice, nothing except come back in 6 months. I will probably go to a MD clinic, the closest one to me is 2 and 1/2 hours away though. Concerning my son, I just don't want to not find out if he has it and look back and regret that I didn't because there was something that I could have done to help him. I had all of my older children walk on their toes and heels and they all could do both. The son that I'm concered about wasn't as balanced and couldn't so it as long as the others, but they all could do it. Thank you for being here and having this wonderful support system. I am truely blessed to have found it. MomOfMany Quote Link to comment Share on other sites More sharing options...
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