Going to see Dr Shy with 2 daughters this week Any advice?

[Guest guest]

Hello

We have been waiting for this appointment for a long time.

Does anyone have any advice for us?

I understand there is an evaluation at days end.

I am concerned about overloading the girls ages 17 and 10 with too

much info.

Considering requesting that they not be present for the whole report

and delivering that which is age appropriate in manageable bite size

pieces.

Thanks

Tammy

[Guest guest]

Tammy,

When I was a kid my mom sent me out of the room. Not knowing was scary. It also

made me feel like CMT was off limits to talk about and that I should be ashamed

of it.

My CMT kids have always stayed in the room to hear all the information. My

doctor talks a lot to the kids while I listen. They are always involved with

treatment decisions. We keep it really and honest even if the truth hurts for a

while. I feel like knowledge is power and nothing is scarier then not knowing

what is going on with your own body.

The last appointment that I took Adam too I didn't even need to be in the room.

Adam just took over. He asked some really great questions and raised a few

concerns. The doctor sent him in for X rays. When the X rays came in the Doctor

explained them to Adam and told him not to worry that everything looked great.

They worked a while longer together to figure out why Adam was in pain. Together

they figured it out and he was given a new AFO script. Adam really felt

empowered. I love my doctor he is so great with kids and teeangers.

[Guest guest]

You had such a great Mom, Gretchen.

My Mom thought that if I heard what the doctor said it would keep me from living

a normal life or playing on my CMT. Give me a break!

[Guest guest]

Speaking as a child of 10, I heard everything about my CMT along with

my mother in the doctor's office. Nothing was 'age appropriate' instead

it was factual, honest, and concise. I heard what I needed to hear for

my age - as I grew older, I began to develop a 'body awareness' and

come to understand my CMT in new ways and adapted. Once I

left 'clinical settings' and began to see a neurologist in private

practice (about age 15) I was ready to hear more, accept symptom

treatment and ask questions.

In the clinical setting, doctors talked ONLY to my parents, while I

waited outside, feeling left out (hey, this was about ME) and letting

my magic magnifying mind create all kinds of horrible things.

As a 10 year old and 17 year old, I handled it. By that time I'd had surgery on

both feet, a muscle/nerve biopsy, and 2 EMG/NCVs, medication and supplement

therapy.

If you have any questions about CMT and your daughters, take some quiet time and

make a list of all your questions; perhaps also include your daughters questions

in the list.

Gretchen