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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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06-02-2008, 10:24 PM | #1 | ||
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Junior Member
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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 |
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06-03-2008, 01:16 AM | #2 | ||
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New Member
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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. |
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06-03-2008, 07:03 AM | #3 | |||
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Magnate
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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
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06-04-2008, 01:50 PM | #4 | |||
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Junior Member
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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. |
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"Thanks for this!" says: | ali12 (06-06-2008) |
06-05-2008, 01:49 AM | #5 | ||
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Junior Member
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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 |
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06-05-2008, 12:32 PM | #6 | |||
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Junior Member
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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.
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"Thanks for this!" says: | ali12 (06-06-2008) |
06-06-2008, 04:03 PM | #7 | ||
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Junior Member
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06-06-2008, 09:25 PM | #8 | ||
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Junior Member
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yeah like i realized that but what is the difference and what will they make you do |
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06-08-2008, 08:20 PM | #9 | |||
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Junior Member
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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. |
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06-08-2008, 08:24 PM | #10 | |||
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Junior Member
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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.
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