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

Hi Sandy,

I do have a facebook page. I am not sure yet how to work this site out. But I would love to see some of the links for facebook. We live in Indiana and I am not having much luck finding doctors to treat her. We see an adult neurologist currently. She was actually diagnosed by a vascular doctor. I will have to do some research, because I do think she needs a very extensive rehab program. She is only at 5% in movement at the knee. We do pool therapy twice a week. Any information would be great. I know Chloe feel's so alone. Thanks!

Dana

Dana

Go to the search bar on Face book and put in http://www.facebook.com/groups/171040539621883/

If that doesn't work it is RSD PaSandyrents Yahoo Group, there is also one called RSD united. This one is all ages. But, the parent group is a really good start. Once on there you will see many other.

Here is another group that can help others, some parents are on here and others have RSD.

Hope this helps.

http://www.facebook.com/groups/Rsdladies/

Hello Sandy- I am wondering how you liked the Cleveland clinic's program. Do you think it helped your daughter long-term?

Lori

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