Re: welcome /similarities in CMT children

July 4, 2006

Hi ,

I was reading your post and found the similarities between

what your daughter is experiencing very similar to what my son

(he will be 4 in Nov.) experienced. When was about 1 year old

he would wake up crying in the night saying his feet hurt and would

want me or his father to massage them. We noticed that he walked

funny and reported this to our doctor. She also said it would be

something that he would outgrow. Deep down we knew something was

wrong and persued the issue.

We took Josh to a number of specialists who couldn't find anything wrong. Josh

had his hips xrayed, ECG, tests, CT scans and finally blood and a test where

they check out the nerves (not sure what it is called). Just a little over a

year ago we were gived a diagnosis. has CMT (and it doesn't run in the

family but was a new mutation). We still don't know what " type " of CMT as we

are still waiting for his blood tests to come back.

I would seriously recommend that you insist on getting your little

girl checked out by your local Childrens Hospital or neurology clinic

and run tests for CMT. Especially since it runs in your family.

still complains about his legs/feet hurting and he now has

AFOs which have helped his walking considerably.

Please get your little one checked. Keep pushing your Dr. to send

you to specialists. You have a right to get the help you need for

your child and refuse to give up and DEMAND that you want answers

as " she will outgrow it " is not acceptable. Good Luck!

Rosie

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