Going to Cornell

[Guest guest]

Hi everyone,

I just wanted to share what we are doing this coming week. On Monday we are

taking Ross to see Madeleine Harbison, M.D., a pediatric endo at Cornell who

" specializes " in RSS. She has quite a number of RSS patients at this point (I'm

not sure how many she has now). We saw her nearly four years ago and she was

the doc who put Ross on the Periactin and started us on his " protocol " . At the

time we saw her he was only 15 months old and we were so new to the whole RSS

experience that we didn't know what to think. I wasn't even really sold on

Periactin and, therefore, didn't give it to him like I was supposed to (you know

how hard it is to give any 15-month-old anything, never mind medicine, plus it

makes them so cranky in the beginning - I just said to heck with it!). Anyway,

to make a long story short, over the last few years we have come to believe that

Periactin works for Ross and have been really sticking with it for a good year

or so. We are at a standstill with our doc - he's just at a loss for what to do

and can't really tell us if Ross is ready for growth hormone - this is the way

we want to eventually go with Ross. We are hoping that Dr. Harbison will tell

us that he is ready for GH. Is there anyone on the list that has seen Dr. H and

is now on GH? If so, what was her condition for putting your child on GH? In

other words, what was your child's height to weight ratio? We have really been

working on Ross' eating (as I know all of us are). I just don't know what else

to do.

Has anyone ever tried anything like a protein drink mix that you find in the

health food stores that is supposed to help you gain weight? Or know anything

about them? Like are they safe for kids?? I just came across one called Weight

Gain (real creative on the name). Wasn't sure about it, though. I should

probably ask my doctor about the ingredients.

Anyway, wish us luck on the 19th! Thanks for being there, gang!

Dennise