Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 07-12-2012, 12:16 PM #1
BraveGirl BraveGirl is offline
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Hello Sandy- I am wondering how you liked the Cleveland clinic's program. Do you think it helped your daughter long-term?

Lori

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Originally Posted by SandyS View Post
Hi Dana,

My daughter was also diagnosed with RSD at the age of 12 years old. She is now 19 years old. I will say that she has gone through many procedures and medications. She went through the Cleveland Clinic pain management for children two times. I am going to tell you that there are several facebook pages that cater more towards families and children with RSD. Do you have a facebook page? I find a lot of help on there. I will be happy to help in any way that I can. My daughter is doing well after all of these years. I know of many families right now with children your daughters age that are on these pages. I will check back tomorrow and if you want to send me your name in a private message I will find you on facebook and send you the links. This site is also a great resource and for many years has helped me through some tough times and for that I am so grateful.

There is hope, so you need to stay on top of this and things will look worse before you see that light at the end of the tunnel. I promise it is there somewhere in the distance. So keep your chin up.

Sandy
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Old 07-17-2012, 07:42 AM #2
SandyS SandyS is offline
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Hi Lori,

Yes, I feel that even after four years, my daughter still uses the techniques that they taught her. I will be honest it is a brutal program, they have a hard time in the beginning,, but they stick it out and learn so many physical, behavorial and emotional ways to live their lives with this horrible disease. My daughter went back and did the program twice. They have other kids there that understand what they are going through. My daughter met her best friend there. They live very far apart, but they are best friends. They are planning on going to college together. Give it a shot. If your insurance company denies it, keep on pushing and pushing, they will eventually approve. They have to say that it is medically necessary. Like I said in a previous post you can PM me for any information.

Sandy
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