My Introduction

[Guest guest]

Hello,

My name is Suzanne and I have an uncle with CMT (my mom's twin). We've always

kept in our minds that I or our children might be affected by the disease but

recently it has taken on a new level of interest for us.

Two weeks ago we were blessed by the birth of our third son. After a normal,

easy pregnancy, he was born with an easy labor and delivery but did not breathe

for about three minutes after birth. Once they got him going he was fine- until

about 10 hours later when he turned dark purple and was suddenly unable to get

any air into his lungs.

To make a long story short he was transferred to the NICU at SickKids Hospital

in downtown Toronto where it was determined that he has bilateral vocal cord

paralysis. He's undergone a number of tests of all kinds over the last two weeks

and each has failed to find anything wrong, let alone provide any indicator as

to why he has this paralysis. There are still a few tests to be done

so we hope to find an answer soon.

As I've spent several hours trying to learn as much as I can about vocal cord

paralysis, its causes and its treatments I was struck last night when I found a

reference to this condition in children sometimes being caused by several

disorders including CMT. I immediately decided it was necessary to alert his

doctors about this finding and our families history with the disease.

While it is likely a longshot that this is what is causing my son's

paralysis: I'm curious to hear from those with infants/children who have CMT.

Specifically, any information on vocal cord paralysis as a symptom. I've also

noted that Dejerine-Sottas disease is the most likely to be an infant onset CMT.

I'd love to hear from families with a loved one with this disease. I'm also at a

loss for any significant sources of information on this any guidance would be

appreciated.

Thank you, in advance, for your thoughts on the subject.

Suzanne