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[Guest guest]

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