Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 MomOfMany, There is way I have tested my kids for CMT at home. It has worked for us and my doctor uses it too. It is not a perfect method. Can the kids walk up on their tip toes without bending there knees? If so how long can they do it? My kids without CMT can just rise up and walk. My CMT kids have a harder time. Its not a perfect method, keep that in mind. My youngest faked he couldn't do it for a long time. When the side walk was hot one day I saw him run his tip toes like no other Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 , Is that type 1A? The top toe test can work at home with kids that have 1A. It won't work with the other types of CMT. I mean the ones you get when your older. Not a sure fire way but it is one test my doctor used. I had a friend who was told her son didn't have reflexes. She did the blood test on him and he is CMT free. I never trust reflexes tests. I was told one by a regular M.D that I had normal reflexes. Yeah sure I did. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 In a message dated 1/22/2006 6:25:49 P.M. Pacific Standard Time, kotack@... writes: The strange thing is that my son who was not diagnosed until he was 16 is effected more now than my daughter who was diagnosed when she was only 8. As we know everyone is an individual case. Wow that is strange! What is this again? jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 When I discovered that I had CMT my neurologist immediately wanted to have my 3 children tested. I wasn't so sure. I asked my pediatrician and he decided to test for reflexes. My oldest (daughter) and youngest (son) had normal reflexes. My middle child (daughter) did not but as far as walking on her toes, she was a ballet, jazz and tap dancer and competed at a National level? At that time their ages were 10, 8 and 7. They are now 26, 24 and 23. My oldest daughter does not have CMT but both my son and middle daughter do. The strange thing is that my son who was not diagnosed until he was 16 is effected more now than my daughter who was diagnosed when she was only 8. As we know everyone is an individual case. I do agree that it is a difficult decision, as parents we want to do whatever is best for our children. Especially if you believe in the power of the mind and that whatever we believe we are is in fact true. Has anyone seen the movie " What the Bleep do we know? " this really makes you think about this whole point? Warm wishes to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 That is really interesting. I will have to try that tomorrow with the ones old enough to understand what I would want them to do. MomOfMany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi , Sorry for he delay with this reply. We have never been tested to find out what type of CMT we have. We were all diagnosed through nerve conduction and EMG. Is it simply a blood test? Warm wishes, Quote Link to comment Share on other sites More sharing options...
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