thanks for all your info i just have one more question how long did you have to wait before you finally got in..?

ahh i start in 3 days!!!

wow i hateee CHOP i cant start now casue some f`ed up my insurence and put in the wronge birthday

I have an extreme problem with eating and i have severe abdominal pain, im going to be admitted as soon as possible! Honestly how do you get through eating and what is the program like!

Hi, I am sorry to hear about you having RND in your stomach. My son did too! He went to Dr. Sherry's program almost2 years ago. He had it in his legs and stomach. prior to the program he was almost bedridden and had lost 24 pounds. 5 weeks of therapy and he was able to go back to school. He never mentions leg pain and rarely mentions stomach pain. The program worked miracles for him. How are you now? I hope things have improved. You are in my prayers.

hi nice to meet you guys
i was 16 when i got rsd i am now 27 but my rsd spread in a yr to all four limbs and now is full body with organ involvement.smccoox i had to have appendix out in dec mine almost reputured tho. i have not been to this program as 11 yrs ago there wasnt really many rsd docs at all . and like you it took forever for a good doc to treat me i ended up in chicago at rush pain clinic and they saved my life for sure learned how to live with rsd and try to go on. i am so sorry that you guys are so young with it as i know how hard it is to be that young and have to deal with friends and rsd and teachers i hope that this program helps you

-carrie

Hi. I did a similar program at Cleveland Clinic for adults. It was a day program as well and was supposed to be for 6 weeks but I lasted 4 days due to my pain and then was refered to the anestesolgist. I don't regret going cause in many ways it helped me mentally and physically. At this point my pain is still too high to do but I would be interested in a similar program that allowed meds as needed other then neurontin etc to get through the high pain times.

I haven't been on Dr Sherry's program however I have been on a VERY similar program in the UK at Great Ormond Street Hospital for Children with RSD! The Program run for 3 weeks and it was extremely hard and painful, however if I didn't go there, I would probably still be in a wheelchair now!! When I went onto the PT Program, I was wheelchair bound and when I came out 3 weeks later, I was able to walk short distances for the first time in over a year!!

My Pain and Dystonia (my foot is rotated at a 45 degree angle) didn't change at all from the first Program so I was told I had to go back for a second time. I went onto the Program in September for another 2 weeks and it didn't help me at all but I honestly think that was because my Physical Therapist wasn't able to spend that much time with me as she was at a conference in San Fransisco about RSD and other pain-conditions.

I have to return back onto the Program in April for another 2 weeks and the PT's are going to try and help with my pain and the Dystonia to see if they can get that under control any ... if the program doesn't help this time then I have been told that I will have to have my leg put in a full leg cast as a last option which I really don't want to do as I have read so many horror stories about it!!

My PT's explained to me that the only people that get better are the ones that put 110% in the Program and actually WANT to get better and wont give up ... unfortunately, too many children give in within a few days just because the pain is too bad and you absolutely shouldn't do that! I'm not saying the Program was easy for me - it wasn't at all and was the hardest thing I have ever had to do in my entire life BUT if it wasn't for that Program, I would still be in a wheelchair to this day!! My pain hasn't changed and is still at a constant 8 and a half on the pain scale but I have been given techniques to try and help with that and it makes such a big difference to my life being able to walk, even if it is just short distances!!

If any of you going on a Program would like to talk to me, please let me know as I have been there and I KNOW just how hard and painful it is however please don't give in - as my PT's and Doctors say, we are in pain all the time so we may has well be in pain and do something!!

Hello
I use to be a Nanny to a little boy on a vent and g-tubed
we use to have to take him to CHOP I have to say that was one of the best kid Hospitable I ever seen, he was in and out of the ICU there all the time,

And one of are nurses that work with me in the home, she goes to CHOP to help get things baby's home,

peace
Kelly

Not to bump an old thread (on some other interest group forums I'm on that's like a HUGE DEAL DON'T DO IT OMG!)

but I live in NJ and was wondering how you 'get into' Dr. Sherry's program. The only website of his I can find is selling a video, and the RSDS.org website isn't helping me either. Maybe I'm just not looking for the right thing. I desperately want to do this program but I'm not sure where to turn!