Bernadette

[Guest guest]

Hello Bernadette,

Welcome from another Canadian. I'm Jana and my daughter Mila is four

(RSS and UPD 7). We live in Vancouver. Where are you on the Island? We have

family

in Brentwood Bay and in Sooke so we do make it over to visit a fair bit.

This site is terrific and the people on it are a wonderful support. I do have to

admit

though that I don't always check it on a regular basis so, if you'd like to

contact us, my

work email jzylich@... might be the best bet.

I'd love to chat about paediatric resources as you mentioned.

Sincerely,

Jana

>

> Hi, I just wanted to introduce myself. My name is Bernadette. I

> have a six year old daughter that has recently been diagnosed RSS.

I

> now find myself in this gray area lacking in real knowledge. As I

> said Caitlen is six, she is 30 pounds and 107cm tall. She has been

> sick most of her life and spent perhaps the first three years in

> hospital.

> She has had about six surgeries related to illness. I think due to

> her lack of size and inability to " bounce back " . At three years

old

> she weighed 16lbs, and was given a g-tube with the hopes that she

> would pack on the pounds and reverse her extreme failure to thrive.

> While she did better, growth has been slow. A combination of the

> periactin and G-tube gives her approx. 1200 calories per day. At

> our last appointment with a genetic specialist he diagnosed

> her " classic features " of RSS , our uniparental disomy testing is

> pending. Her recent bone age showed a bone age of

> three years three months, she is six years two months. As you may

> have guessed we are sadly lacking in paediatric resources. I

noticed

> that a fair percentage of you see Dr.Harbison. Could you tell me a

> little about her. Is she worth seeing. I am from Vancouver Island

> the furthermnost westcoast of Canada. I would appreciated any

names

> of Dr.s that have experience with RSS. Thank you