Question about Utah Doctor

October 22, 2008

Hi Everyone,

I was wondering if anyone knows of a very good Pediatric Orthepedic

Doctor in Utah(of course who's knowledgeable about CMT)? Around Salt

Lake City would be nice, but we'll travel. We have Primary

Children's Medical Center here. I tried the CMT Association Web-site

and used their recommended neurologist for this area, but he was

supprisingly un-informative and un-helpful.

I don't mean to be critical, but he actually asked me, " So what do you want me

to do? " I was shocked! I told him that I'm new at this. We know of about 10

people in my husband's family that have had (deceased) or do have CMT, including

my husband and my daughter. We just realized what this is in my husband's

immediate family in the last 6 months.

It's a long story. Apparently my husband's dad just thought they

had " funny " feet that ran in the family, but didn't realize what his

older siblings knew, that it was CMT. My brother in law in Idaho was

the one who initially got diagnosed and told the rest of us. It's

not like there's any doubt that my daughter has it, she's always

walked on her toes and went through castig because the doctors

thought she just had tight or short heel-cords. The casting didn't

do anything for her, just seemed to make her muscle tone decrease.

Anyway, I don't understand how the doctor who was supposed to be this

leading expert could ask me what I expect him to do. He also seemed

to not think it's a big deal. I've let a few months go by since I

saw him and haven't taken her anywhere else because I HOPED he was

right and it isn't a big deal. Lately she's been telling me her legs

hurt almost constantly and she's walking pretty high on her toes.

S

he also expressed sadness about not being able to play with the

other kids at recess because she can't keep up. I HAVE to do

something! Any input would be appreciated. Thank you so much for

this group!

Jen

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