Re: testing a child for CMT - my experience

January 23, 2006

Gretchen,

I just tried to do the toe walk and the heel walk and I could do the

toe walk but not the heel walk. It was really weird. My husband did

it with no problem.

I have one son that has had some problems from birth. He was what they called a

floppy baby but he has hypertrophy in his neck and shoulders. He was delayed

with most things, he didn't roll over til he ws 11 months old. We saw countless

doctors and none had

any reasons. They and the physical therapists who examined him were

in agreement that something was " up " but not sure why.

Fast-forward five years and now he has told me things like " When my

feet are cold they feel fuzzy. " " When I wake up in the morning my

legs hurt. " He has always had trouble with fine motor skills

concerning his hands. He does tire easily. I just want what is best

for all of my children.

Should I at least have him looked at? Are there early intervention things that

can be done to help him? Would he benefit from therapy?

This is all so new for me. Like I said in another post I was just

diagnosed a month ago. I am just learning about CMT.

Another thing that I would like to know that I haven't been able to

fully understand is DSD. Could my son have this " type " of CMT if I

have a type of CMT1?

That may be a silly question for those who are more familiar with CMT, but

please be patient with me as I am just beginning to learn. From some of the

things that I have read I get the impression that they are entirely different

and then from other things I have read I have gotten the impression that DSD is

called that if they show symptoms before the age of 2.

MomOfMany

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