DR.SHERRY`S PROGRAM AT CHOP (childerns hospital) FOR RND
 

hi i recently have been told that i have RND im 16 i have been throught many docters before i finally saw dr.sherry and the childerns hospital of philly .. i even let them take out my appendix .. im in the waiting list for his program to retrain my nerves and theres not really alot of info about it i dont no what to expect and i was also wondering is its a during the day thing or if you had to stay there every night.. while your doing the 3 week thing (apx. 3 weeks)

thankss:confused::confused::confused::confused:

Hi,

If you go to youtube.com and search rsd there is a video called "RSD A Kid's Story Through Pain part 1 & 2." It shows the treatment they do at CHOP.

Hope this helps.

Hello and welcome to the forum - my name is Alison, I am 13 years old and I suffer from RSD/RND in my left leg and right arm, if you ever want to chat I am here!!

I live in the UK, so don't know exacly what Dr Sherry does in his program but there is a similar program that I am going to start in July. I believe that they retrain your nervous system to behave in a "normal" way, they also deal with ROM (Range of Movement), Desensitise your limbs etc.

Here is a video about a girl named Alessa that went on Dr Sherry's program and she made is an almost full recovery!!

http://www.youtube.com/watch?v=JOTUzQWbmYw
http://www.youtube.com/watch?v=kAVsIf_3e_k

In the video the girl stayed at the hospital on the ward whilst she was having the PT as she was from out of town. I think it all depends how close you live from the hospital as to whether or not you are able to travel home and back to the hospital everyday. Her parents also stayed at the Ronal McDonald centre whilst she was having some of her PT

Hope this helps
Love and best wishes
Alison

Gone Through 3 Times
 

Hello smccoox. First off nice to meet you. Second sorry to hear you have RSD/RND.
My name is Austin i am 18 and have had RSD/RND for over 5 years now. And have been to Dr. Sherrys Program 3 times all ready. Believe it or not 13 is the common age alot of kids start with it. Its even the age i started. I started with RSD in my Left foot from a injury. Went to sherrys program for the first time and after 3 weeks i was able to use my foot again as well as trained myself to be able to live with the pain to the point i could ignore it. Sadly mine came back again in both knees, both hands/wrists and my chest wall, went down to the program again and went through a week of therapy and was able to get those parts under control. But sadly again mine came back and it came back hard as ever, it came back in the nerves around my heart and also in my stomach. Went down for therapy again and sadly this time the program failed to do anything and the week after i came back it also took both my eyes. But do not worry most kids go down for the first time and are fine. Others maybe a second time but usually only once or twice. The biggest thing to remember is not to give up and push yourself beyond what you want to. Cause thats whats going to make you better. For the day program no you do not stay overnight there. You come into the Seashore house and start at 8am and leave at 4pm. It is a very vigorous physical therapy program. You will get a schedule and on it you will have 3 OT's, 3 PT's, Lunch And Than A Music Time Or Talk Time those 2 switch each day so one day you'll have Talk Time and another you will have Music Therapy. Oh and i forgot you will have pool each morning except Thursday you'll have yoga. Heres An Example:

Pool
PT
OT
PT
Lunch
Talk Time
OT
PT
And i am not joking when i say you will be exhausted at the end of the day.
If you want to know anything else just let me know.

omg thats your just cleared up alot for my but i do have one question .. what is pt and ot and what will they do to help my abdom. pain

PT mean Physical Therapy and OT means Occupational Therapy. Basically it will be alot of physical therapy that while it will make your pain worse, it gets worse before you get better. Its not easy and alot give up but you can't give up you must put yourself through it to the end and believe in yourself and push farther than you think you can. And don't stress out over the timed stuff you have to do. Just take a deep breath and tell yourself you will beat it. Cause each morning in PT you will have to do them first.

Hey my name is Kate and i am doing dr sherrys rnd program hopefully this summer, and honestly i am so excited and scared at the same time. I have alot of symptoms the main being my stomach which has been the worst then ankles, knee and wrist but not bad, just alot pf pain resembling breaking the bone. First a few questions, were u admitted when you in the program, they are pretty sure i will be since i have trouble eating, how long did u have to stay in the program the first time and i dunno how was your feelings torward the program. Sorry im very nervous about going i need to know everything!:p

yeah like i realized that but what is the difference and what will they make you do

No i was never admitted even though i had trouble with severe nausea and was not really eatting, Dr. Sherry had told me i was going to be but they messed up with the paperwork.
1st time i was there i was there for 3 going on 4 weeks, second time i was there for 1 week and the 3rd time i was there for 2 weeks. The program works for alot of people and i recommend it for anyone but sadly even Dr. Sherry's program as i found can't fix all. But i am thankful him helping me with the first two episodes i had.

depending on ur rsd/rnd sometimes there the same other times there different as in ot will help u with home and daily activites getting back to those thing you dont do any longer and pt is just touture its like a fitness gym. remember vigerous physical therapy all around.

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!

RND in the stomach
 

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!

He is at CHOPS, but there is another great program at the Cleveland Clinic Childrens Rehab hospital...
http://my.clevelandclinic.org/childr...ain-rehab.aspx here is the link...it is a lot easier to get into this than Dr. Sherry's program. My daughter did this program and I highly recommend it.

Any questions feel free to pm me.

Sandy

Also, this has a great video as well.

I'll look into it if I can't get into CHOP's program, but the PA one would be so much easier for me- no travel required... I live about an hour from philly right now. Thank you so much!


(sorry, I had to remove your link from the quote because it won't let me post links yet... woops!)

Great that you live close by....I would definily try to get into the program. I have heard so many good things about it. Good luck and I hope you get in soon.