Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hey Amelia, It is always hard seeing a child go through all that but I realized love is a powerful thing. I am convinced my 7 year old daughter has it and I feel sad about it but at the same time I got through life by my good qualities and so will she. She knows her daddy has bad legs and she still loves me despite my limitations. She is a huge help to me and takes pride in helping her daddy out. I made a decision that I will not get her tested for many reasons but when she is older and she decides she wants to know I will honor her decision. Keep your spirits up. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Amelia..I'm so sorry...do you also have CMT? Sorry I can't keep all on the list straight.. wishing you well. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Amelia, I am sorry that you have to go through this and as a parent, I feel your pain and fears. I took my son, 18 years old, today to the pediatrician for some preliminary neurological tests because we were having a hard time getting reflexes in his lower legs, so I understand your guilt and sadness. As everyone told me, YOU did not cause this. It is not like you drank and did drugs during your pregnancy, so try to take the guilt out of it (I know, easier said than done) All of us here that have CMT know that she will be OK, but of course, it is not the path we choose for our children. My thoughts are with you. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hi Amelia. My Adam had CMT at 3 and I had it at 4. Being diagnosed at a young age only means that the parents knew what to look for and so did the doctor. Don't let what your doctor said about her reflexes scare you. My old family doctor said Adam had " normal " reflexes when he was very much affected by CMT. I knew he didn't have " normal " reflexes. Another CMT friend had a doctor tell her that her youngest didn't have any reflexes. His blood work came back neg for CMT. This is going to be okay... Stay positive, watch for signs of depression and if you need to talk I am here. My boys were diagnosed when my baby was 6 weeks old. UGH the memories. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Remember even with a negative DNA blood test, you can still have CMT. They don't have tests for all subtypes of CMT yet. Elinor Quote Link to comment Share on other sites More sharing options...
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