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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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10-17-2012, 09:45 AM | #1 | ||
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Guest
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You need to put your foot down. Ice is the worst possible treatment for RSD closely followed by Hot and cold water contrast therapy. Aggresive physio is also another big no no. It can cause it to spread or ruin any chance of remission. Even says not to do it in the American Journal of Medicine. Physio should be intensive, meaning lots of it but when the pain starts to rise your daughter must tell you and you have to insist they stop.
Ideally she should be given pain medication immediatley before any physio session starts. Then you need to encourage her to continue to do mild exercises at home as often as she can. |
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10-17-2012, 12:24 PM | #2 | |||
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My experiance with pt was fairly similar. First time was ok, second time was unruly, and it got worse from there. You need to stand up and put your foot down. I wish i had, the wrong pt set my back quite a bit. Now going through it at home with a much lighter pace, and am slowly but surely seeing improvement, with minimal extra pain.
If they wont listen maybe you should find another pt place. Good luck, and my prayers for your little girl. |
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10-17-2012, 12:40 PM | #3 | ||
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Sounds brutal to me. My wife has RSD but is not young so I'm not sure how PT treats the very young with this condition. Ice is not a good idea what so ever.
My wife and I also live in Nova. We live in Fairfax which some would think would be a mecca of RSD treating doctors. After 10 years dealing with a loved one with RSD, the DC area has been the opposite as far as I'm concerned. I'm curious to know who is treating your child. I may be familiar with the doctors or facility. I could also recommend a couple places that may help. But sad to say it seems the best who treat this disease are not in the DC area. |
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10-17-2012, 09:34 PM | #4 | ||
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Magnate
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Ice will cause permanent nerve damage and possible spread. Immobilizing her limb is also likely a very bad idea. How much experience does her doc have with RSD???
Warm water PT would be a better option, IMO. You need to find a therapist experienced with RSD. Research children's inpatient RSD programs offered at one of the hospitals. There are several threads about children's programs here on NT. It will offer her the best chance for remission. (The sooner the better.) |
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10-18-2012, 04:55 AM | #5 | ||
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I agree with the others. I think it's time to find a new therapist. The fact that they are using ice and contrast therapy shows they are not educated on "best practices".
When you interview any professional that will be treating CRPS, ask them directly how much experience they have with CRPS. Good luck to you and your child! |
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