Re: Testing your children for CMT

[Guest guest]

Yes, Mandy, seems like the orthopedist didn't have time and didn't want

to 'make the time' to fully examine your son. Was this doctor associated with an

MDA clinic? Has your son been evaluated by

a neurologist? And yes, suggestions as to physical therapy, perhaps swimming

too, maybe even taking Vitamin C might have been offered.

Gretchen

[Guest guest]

No, Gretchen, this was not an MDA doctor. I came home and called to

schedule an appointment for both of my sons at an MDA doctors office

or clinic (not sure which.) My younger son has not seen a neurologist

since he was 12 months. My older son saw one for possible seizures,

and testing was discussed at that time. The pediatric neurologist

strongly felt it was best not to test unless they were having some

issues. Of course, they have SOME issues, but they are mild. The

Developmental Pediatrician we were seeing at the time felt it was

insane not to test them. Wish I had done it right away, I think

now. My older son is 13, and having such an identity crisis already.

I hate to spring this on him when he is having no problems but flat

feet at this point. Maybe I will take care of my 9 year old first.

Mandy

[Guest guest]

Mandy,

It sounds like you should get him diagnosed through a blood test so

you can better advocate for him. I had my 4 year old diagnosed and

it has helped me take the next step with her. It seems you sometimes

have to find that caring dr. or physical therapist that will really

take time with your child. It seems to me her neurologist/surgeon

are much more matter of fact about CMT without much advice. They

just say... " Well she has CMT. I'll see you in a year. "

Her physical therapist did a full physical test on her, testing

strength and all of her gross motor skills. IT really helped us to

have that baseline. Then we made a plan for physical/occupational

therapy. It really has helped and was a turning point for her.

She walks up and down stairs now, rides a bike, and runs more " normally " . She

still struggles with her pencil grip and

handwriting. I'm just trying not to make it an issue. For four she

already knows how to write and I think that's pretty cool regardless

of how she grips her pen. I wish you the very best.

Amelia