Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Welcome le!!! My name is and I have an 8 year old daughter with RSS, and I am the volunteer co-head of the RSS/SGA division for MAGIC, at least right now!!! I always have had trouble getting doctors to listen. Remember that RSS is so very rare, about 1 in 50,000 to 1 in 100,000!!! Even great doctors will have very little experience with RSS. But that is also why so many of us travel so far to see Dr. Madeleine Harbison ... another story. We would love to see you at the convention. Last year we had more than 120 RSS families, with kids of all ages. But I will forewarn you ahead of time -- many of us parents of " older " kids stand in line to hold the new babies!!!!! Congratulations on the birth of your son! Guessing you have already gotten the RSS info from MAGIC? Salem > Hello, my name is le. I have a 7 month old son who has RSS. I > am quite new to all of this. Did anyone have trouble getting doctors > to listen to them? I am usually looked at as an overprotective > mother. Also, is anyone going to the conference? If anyone has any > advice for me, please feel freeto tell me. I need all of the help > that I can get.talk to ya soon--le 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.