Re: small children with CMT

[Guest guest]

Hi Sherry,

I used to have small children with CMT. Now they are 15, 16, and 19.

Seems like yesterday they were 4, 5, and 8. If you need to talk I am here to

help anyway I can.

[Guest guest]

Hi Sherry,

My daughter was 7 yrs old when we found out she had CMT, (we still do not know

what kind she has), when she was 6 mos. the dr. had her in a frog brace because

her legs and hips didn't spread apart far enough (was pretty hard changing that

diaper). She also fell down all the time and we just thought she was clumsy. We

were camping with friends one summer and they brought it to our attention that

she drags her right leg.

Well that started all the trips and the testing at gillettte. She is now 27,

mother of 2 and working, (she doesn't think that she is different then anybody

else and wants to work). She does complain a lot now though that her back

bothers her and her legs feel like they are sleeping. She sometimes has trouble

getting up in the mornings.  She does ride horses (one of her 4h projects

growing up) and that helped a lot when she was young.

 

Sharon

[Guest guest]

Sherry,

My grown daughter has CMT and a grown granddaughter and I think my G.G.son has

it also, he is in 1st grade. but his parents don't want to talk abut it ..Have

their head in the sand....I feel bad about that!

Geri......Minnesota

[Guest guest]

Thanks, Sharon. It's good to hear about others who have/had kids with

CMT. We are looking into horseback riding too, so it's nice to hear

that it helped your daughter. It also sounds like she's doing very

well at 27 - also reassuring.

Sherry

[Guest guest]

Thanks .

I do have a few questions - do you know what kind of CMT your kids

have? Do you have any advice/insights as to what worked well? What

were the modifications they needed at school? My daughter will start

kindergarten next year. At this point she walks/climbs/plays fairly

well, but she has an awkward gait, poor balance and fatigues easier

than other kids. We've had her in PT for years and are working on heel

cord stretches, but we want to do everything we can for her. I'd just

love to hear anything you want to share about your experience.

Thanks so much,

Sherry

[Guest guest]

Thanks Geri. I'm sure it's hard for you to see your GG son go

undiagnosed, but I'm sure you understand how hard it is to deal with

it too. Sounds like there are a few of us in Minnesota. Did your kids

work with Gillete? Anyones else in the area you would recommend?

Sherry