Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 > > > > 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 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.