Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 In a message dated 9/29/2001 8:46:08 PM Pacific Daylight Time, nightmere1@... writes: > Any advise on this would be deeply > appreciated! > > Jodi > > > Wow Jodi, I was in your shoes a few years ago. 3 of my kids were DX with CMT. I felt so desperate. The Journey of the last few years has taken me to many diffrent levels of emotions. The AFO's that they make now are very good. My son does so well in them at times I can't believe what he can do. Saturday he climbed a rock wall 2 times all the way to the top at the girls scout fair. My boys love to ride motorcycles and play video games. They get plenty of exercise swimming and jumping on our trampoline. There is something we can do as parents. We can't change the CMT but we can make sure they have a happy normal life. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 A couple of days ago I found out the results of my son, Xavier's, genetic testing...it came back positive. When I asked the doctor on what I should do now, he just said to follow-up, that there wasn't anything else to do until he gets worse, basically. I just couldn't believe that there is absolutely nothing that I can do to help my son in some way. I plan on calling the MDA coordinator on Monday for advice on this, but I thought I'd ask some here, too, because you all know on a personal level. Any advise on this would be deeply appreciated! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Jodi Early help with CMT is vital to prevent secondary damage occuring. Find another doctor - you know you can't just sit by and wait for his to get worse. These doctors make me mad - their ignorance is causing us so much damage. Maybe we should all think of suing - then they'd learn quick enough about CMT Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: nightmere1@... Sent: Sunday, September 30, 2001 4:40 AM Subject: [] results are in... A couple of days ago I found out the results of my son, Xavier's, genetic testing...it came back positive. When I asked the doctor on what I should do now, he just said to follow-up, that there wasn't anything else to do until he gets worse, basically. I just couldn't believe that there is absolutely nothing that I can do to help my son in some way. I plan on calling the MDA coordinator on Monday for advice on this, but I thought I'd ask some here, too, because you all know on a personal level. Any advise on this would be deeply appreciated! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 In a message dated 9/29/01 11:46:08 PM Eastern Daylight Time, nightmere1@... writes: > . Any advise on this would be deeply > appreciated! > The MDA would be my first choice. E Quote Link to comment Share on other sites More sharing options...
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