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
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Originally Posted by Cassmom
Hello and thanks for reading this. I have a wonderful 14 yr old daughter that keeps on having these strange spells of pain that regular doctors had been saying was some type of pleuracy. Finally this last time they decided that she had, had this type of pain too many times and sent us to a Rheumatologist. Just yesterday they told us that she has CRPS. This is the first time that she has ever experienced swelling in her shoulder blades and colar bone area. The pain was so severe last spring that she even passed out. When she is not having a spell she plays both volley ball and basketball. However it is now basketball season and she has missed her first three games and has even missed three weeks of school. She has finally been able to go back to school; today was her first full day back. She has been in physical therapy for two weeks now. When we went to the therapist today I explained to them that I thought her swelling was coming back and she looked at it an agreed. In the past this pain has been something that would come and last about a week and then go away. It has been over three weeks and she still has swelling and even driving over a speed bump hurts her. Can someone please explain this thing called CRPS to me I only know that because of this horrible condition I can't hug my daughter and make everything ok
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