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Originally Posted by RNcrps2
MomofR, Sad to hear your daughter has CRPS. You are right they say the 1st 3-6months is when CRPS can go into remission. I never new who to trust. Ortho was ignorantl, PT/OT continued to treat me as a regular injury. Luckily i found a pmDr. that hasnt had many patients with CRPS but very knowlegeable. His tells me if PT/OT does anything that causes pain to stop! If they do something that doesnt hurt but hurts for a couple of hours later for a short period later-its ok. The reason is with CRPS everytime you cause pain the brain which is overloaded from CRPS will send not just pain signals to normal pathways but begin finding new pathways. It is important to keep joint moving but not to the extent that causes pain then spread. I believed this but i wanted to hear from someone that has treated hundreds of CRPS-(Scwartzman PA, Kirkpatrick Fla, Getson NJ). As for blocks, had 4 in 2months. Maybe its too dangerous for a child although nothing is worse than CRPS spreading. momof4
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From what you have told us your daughter has RSD from a ortho problem. If you are willing to travel the Hospital for Special Surgery, NYC has a full pain managment dept. with some very smart doctors and the ortho doctors are just the best. I have many years of many expiences in that facility and truly just the best care I have ever received and I have been to many others during my journey. It's hard when you have to travel because RSD is not a quick fix but your daughter is in the beginning which is so key to remission. Someone mentioned a teaching hospital I agree maybe the University of Chicago, I believe you said you are from that area, somewhere that is resonable to return to for follow up etc. It's great to travel to all these big doctors but sometimes it just not practical. I live in NJ but still travel 1 and 1/2 plus sometimes to Manhattan. So it's still a all day event.
The website for HSS is
www.hss.edu.It's pretty informative and you can read about the doctors and I here they have a great peds. ortho department. I know how the place works unless it's clearly just the RSD they will want a ortho doctor of there's look at her knee.
Good luck
Gabbycakes