Originally Posted by SandyS

Hi Cassmom,

My name is Sandy and I also have a 16 year old daughter with RSD/CRPS, finally diagnosed in December 2008, but sick for 6 years. I'm sorry I wish that I could tell you that this is going to be easy, but, it isn't. Like I tell every other parent on this board the first thing you need to do in school is to get her a 504 Plan, or even better an IEP for other health impaired. Protect her immediately. DO NOT WAIT! She will miss a lot of school. If she is in Honors classes or AP classes there are laws that protect her under IDEA and 504. Get that protection right away...That will be the first advice that I will give you while she is in the beginning stages. If you would like me to post web sites for you I can. This will get overwhelming. Just remember you are her advocate right now, take the great advice from these wonderful people, they know what they are talking about. And they are also a great support group for us mommies. I don't know what I would have done without these caring people. My daughter did two three week Pain Rehabilitation programs. She has also undergone Ketamine Infusions, which have so far been successful. God willing they will continue to work. See about getting her someone to talk to, keep an eye on her and make sure that there is no depression. They tend to start losing friends. Keep a watchful eye and tell her everything is going to be alright.

Keep praying, keep your faith because it will be tested, I will pray for you that God will give you the strength that you will need to conquer this dreadful disease. I haven't been able to hug my daughter for many years, my heart breaks for you. As Loretta always says soft hugs to you.



SandyS