Bernadette

[Guest guest]

Hi Bernadette

First of all welcome to our little family. I wanted to first ask you

if you have checked out the Magic Foundation yet. They are based in

the States but have fabulous resources for us all. They deal with a

variety of growth disorders, including RSS, and with membership

(around 30.00 a year) you get newsletters, access to research

articles, advice, and there is a yearly convention down in Chicago.

Check them out at www.magicfoundation.org

Secondly I wanted to be the first Canadian to welcome you. I am in

Toronto, a little far away for me to be of benefit to you. However

we do have members from B.C. and Alberta. Give them a day or two to

see your email and I'm sure they will be in touch with you.

Dr. H. is in New York. That's a huge travel for you to do and would

be ultra expensive (besides the travel costs there would be the

medical costs to deal with). My endo. is based at Toronto's Hospital

for Sick Children, if you ever thought you might want your endo

to " talk " to mine, I can give you his contact information.

However, I do have to say I am impressed you guys are on periactin.

My son is 12 years old now, wasn't diagnosed until after the age of

2.....started growth hormone at 8 years of age, and never had a

feeding tube. We never did periactin and basically my endo (when I

mentioned it) was totally against it. In the long run, Adam is a

good eater overall and perhaps as an infant he should have had a

feeding tube (I don't know for sure, it's one of those mysteries

that no one will ever know the answer to)but we didn't have those

options. My point is that it sounds like your endo is mirroring Dr.

H's protocol.

Take some time to educate yourself, visit the Magic site, talk to

all of us a bit and see how it goes. You may find you are doing

everything that needs to be done without the expense of seeing Dr. H.

I did attend the convention twice now. I drove down (about a 10 hour

drive for us). However, I felt it was important for Dr. H. to just

confirm Adam's diagnosis of RSS. It was important to me. That might

be something you consider as well. She will consult at the

convention and provide you with suggestions on treatment that she

feels is critical.

Again welcome, and I'm sure the western contingent of Canadians will

be welcoming you soon as well.

Take care

Debby

>

> 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