Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Welcome !!! I hope you find great comfort, wisdom and humor in our posts to this list serve!!!! Salem RSS-Support wrote: > Hi , > > Welcome to our group. I hope we can answer your questions. > > First, as far as treatment with growth hormone, that depends on your > son and his doctor. Some doctors are opposed to growth hormone for > RSS. Other doctors, like Dr. Harbison in NY use growth hormone > regurlarly. Most are some where in between. > > > Also, a diagnosis of RSS doesn't have to wait until 2. Many on this > list have children that were diagnosed almost at birth. My son was > first diagnosed with RSS when he was about 1. Others were not > diagnosed until much later. > > Last, There are others on this list who live in New Zealand and > Austrialia. > > If you have any questions, please feel free to ask. > > I hope this helps. > > Ken M > > > > > > > > hi > > My name is . > > My gorgeous little boy is currently 16 months old. He was born at > 35 > > weeks weighing 1515grams - 3lb 5oz. He has not done any " catching > > up " in terms of weight and length since birth. I was interested > > recently to learn about RSS - having been told by one doctor that my > > son was " just little " I decided to do some investigating of my own! > > I found the MAGIC web site and of course tne RSS page - Finlay has > > ALL the charecteristic traits of RSS - mnay traits we had observed > > over the last few months but not realised they were at all related - > > eg small high ptiched voice, curved fifth finger, small crowded > > teeth, lateness of closure of fontanel...incredible > > Anyway we have not receive a formal diagnosis but were already aware > > that being small was always going to be an issue for him. My > > understanding is that RSS is not diagnosed or " treated " in terms of > > GH therapy until after the age of 2 - but it has been great to read > > all of the posts on this site and just find out a bit more about the > > road ahead! > > Finlay is currently 16 months old and weighs 7 kg (14 lbs???) we > have > > been using periactin anyway for the last few months and also a > liquid > > fod supplement - pediasure . > > We live in New Zealand and would be interested in hearing of anyone > > else with a similar experience > > Many thanks > > Jul > > > Quote Link to comment Share on other sites More sharing options...
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