Heather,

I know I posted and told you what I think you SHOULD NOT do regarding what doctor to see and what hospital to work with.

I am telling you all this because it is what I SO WISH someone could have told me, when I was first diagnosed with RSD! I had a bad experience, and so did a friend of mine with the children's hospitals! For some reason, when children/ teenagers get diagnosed with RSD the doctors assume that the child/ teenager has psychological problems that caused it! No matter if you say "But it started with an injury! She doesn't have psychological problems"... some will give you this reply, "In 80% of children there is psychological stress and we cannot find an identifying injury". Just because the child cannot remember the injury that started it doesn't mean there isn't an injury starting it! (I mean, the child wouldn't remember every bump and bruise, and the RSDSA says that even a deep bruise can cause RSD!), and yes, 80% of children/ teenagers do have psychological stress!! All teens have life stresses- think about teens breaking up, having relationships and additudes, etc! But that does not mean that it causes RSD! An injury starts the cycle of the body going haywire.

Why do doctors who work with children/ RSD say that it is psychological, but doctors who work with adults/ RSD don't say that? (for the most part!)

Dr. Robert J. Schwartzman states "it's never, ever psychiatric. When you have severe pain that totally wrecks your life, you're depressed."

In contrast, doctors from Children's Hospital feel it IS psychiatric! So, I am just begging you, unless you feel your daughter has a psychological problem, PLEASE don't fall into their hands. They will put things into your daughter's medical records that you DON'T want!! They always slant things their way, and they see you and your daughter as psychological nut cases. That is really the way it is.

Now, what SHOULD you do? I would suggest looking for a pain management doctor who works with children/ teenagers. It'll be hard (and the pain management doctors from the children's hospitals won't work), as a lot won't work with children... only adults. I'd suggest finding some, calling and seeing if they work with teenagers and RSD. A neurologist or rheumatologist would also work well! Just make sure they deal with RSD and teens. That is what I had to do. It was hard finding one, and waiting some time to see him, but it is the best that can be done under the circumstances.

A good doctor can start your daughter on medications, injections, therapies, etc. and hopefully things will make a good turn around for your daughter!

I really hope things work out! Take care!


P.S. I know you must feel so bad for your daughter... I know how my parents feel so bad that I am going through all this, and they feel so bad that they are so helpless. Even with medications I live in severe pain (nearly full body RSD), and there isn't anything my parents can do for me. The only thing they can do is lend me a listening ear sometimes and encourage/ comfort me.