Re: welcome Gretchen/CMT children

[Guest guest]

Hi Gretchen,

My name is . I have 5 kids, 3 with CMT. Of course I am sure many things can

cause what your son is experiencing but I do recall some similarities in my son

Adam when he was 4. He would wake up crying at night thinking things were

crawling on him. We also had to give him

Benadryl. Another thing I noticed is that during the time when his CMT was

starting he ran a lot of fevers. He started to trip and fall. (I thought it was

his new shoes making him fall.) His legs would get weak and give out on him.

He had to wear high top shoes to help him walk. He started wearing ankle foot

braces called DAFOs. They really helped him. He could run and play again

without the worry of falling. I believe the DPT

shot aggravated his condition because it was right after that last shot he and

my daughter started showing more noticeable symptoms. Just my opinion, not a

fact at all. I could go on and on...

Can you go to a Childrens Hospital where they see CMT and other disorders on a

daily basis???