Re: recognizing CMT in a child

[Guest guest]

Hi Jen,

I didn't see any CMT my kids until 2 doctors told me they had it. I was in such

denial. Everytime the thought crossed my mind I pushed it out. Adam was falling

all over himself at 4. Spencer was slow and couldn't run well by 5. Adam could

run like the wind up to 3. That was with my first 2 boys. My 4th child

also had CMT but by then I figured she had it even tho she only showed a few

tiny signs. My 5th and last child I just knew he had it. I saw it in everything

he did and guess what?! He dosen't have CMT. Go figure...

Some doctor I am. He is almost 8. I am so greatful that I was wrong. I was so

scared not knowing the future. Now my CMT kids are 15, 13 and 11. I still

worry I m still scared but everything is OK. Not what I planned Not what I

wanted but what can ya do?!

[Guest guest]

My son was diagnosed at the age of 2 and our main concern was he walked on his

toes and couldn't walk very far (only a few steps) without his feet buckling.

I took him to a foot specialist and they couldn't find anything wrong so we were

sent to a neurologist who after a bunch of tests and some physical therapy, did

the blood testing and it was discovered.

[Guest guest]

Hi Jen:

Our 4 year old Gavin showed signs of something at one year...he, in the words of

one friend, 'always looked as if you could knock him off his pins at any

moment'.. He had trouble with stairs, walked slowly (though we thought he was

just daydreaming), had trouble running and fell alot.

Because he had repeat ear infections, we thought his balance problem was

middle-ear related. Then he had a febrile seizure with an ear infection and

walked

like a drunken sailor for 3 days afterward. Now we suspect that it was due

to CMT.

His feet started to look funny at 2, dead flat with big toes turning outward.

He was diagnosed at 3 1/2, when he starting falling behind on gross motor

milestones...he couldn't jump with two feet, etc...

Hope this helps...

Cheers

Sally

[Guest guest]

Hi Jen.....

We found out that our son had CMT at the age of 2 and a half....he didn't

walk til he was 18 months and we had him in early childhood therapy. A year

later we took went to a geneticist and had DNA bloodwork done and he was

diagnosed

with CMT1X. He is now almost 8 and continues to get therapy, he is also

Autistic on top of his CMT, poor little guy got a double whammy.