Dr. Shy and staff

[Guest guest]

Hi,

We are contemplating making a trip from California to Michigan to see Dr. Shy

and his staff. My husband has CMT and has AFOs that he hasn't worn in years.

He has also had reconstructive surgery on his feet (in his early 20s).

My 4th child also has CMT and she's 5 years old. We have been told she does

need to get AFOs. We have also had one doctor suggest botox and another suggest

hamstring lengthening. Would they be able to help us in those decisions -

surgeries... and what other benefits would you say we may receive by going out

to see them?

Thank you! We're trying to weigh this out and would love your ideas. Also, we

do have one other child that we suspect has CMT and we are trying to decide if

we have her seen too. She's 7 years old. Any thoughts would be greatly

appreciated!

Amy

[Guest guest]

Amy,

Dr. Shy and his staff are certainly knowledgeable, but have you considered other

doctors within California? (yes there are some) 's doctors (for her kids)

and orthotist are great, and others. As for botox, NO, NOT FOR CMT. It can make

CMT worse! (This from Greg , CMT expert in Seattle)

Sounds like you need a 2nd opinion plus some lifecoaching on where to start with

your 5 year old. DAFOs help some kids, other kids may not need them. Surgery on

kids, maybe, I had as a kid, too, but now it seems to be done less and

less. Not everyone needs AFOs and many like your husband, have them, but don't

wear them. Before you leave the state email me and I can give you the name of a

pediatric foot surgeon and some other docs (orthos and neuros) in California

that know CMT.

If you suspect your older child has CMT, you may want to consider genetic

testing. However, genetic testing is not treatment. There is no treatment for

CMT at this time. However, STAR's initiative is working hard on testing of

compounds that will lead to a therapy, slowing and arrestment.

Hamstrings can be stretched through age-appropriate Physical Therapy where it is

actually fun for the child and at the same time reinforced at home.

Gretchen

Gretchen