Hey.

I am not familiar with places in the uk. But if there is a rehabilitation hospital for stroke victims/brain injuries/spinal injuries/etc (just more severe injuries, not just broken bones), I would try there. I went to one and they weren't 100% familiar with rsd but sometimes something similar to rsd forms to some stroke victims. And typically, pts and ots in that environment are better prepared for more difficult cases.

I dont want to lie so I will be honest with you, I went to one and yes, I got out of the wheelchair and can walk, but I am still in tons of pain and I limp really bad and my limbs freeze up all the time. but they were comparing my rsd to the previous girl who had rsd in her left foot who got a dvd on the pt treatments of rsd and it was a 2 week program. she brought the dvd to this rehab place and she completed the program in 2 weeks. But the dvd was AWFUL!!!!!!!!! it made it totally seem as if all kids with rsd are pretty much really whiny and faking it and the kids were running and jumping after like 2 hours into the therapy. They were kinda expecting me to be the same way and realized once I got there that hmm, maybe im not faking this but it took me like 4 months and they discharged me and said they did all they could do (had an immoble hand, 5 immoble toes, and one of my legs was acting up really bad and throwing me to the ground). but they just went by a pure rsd dx when there was more than that. and yes, my rsd spread to nearly full body after starting there (was originally my 4 limbs).

but they really were good there. it helped me being around others (not children) that all had diff. problems that we couldnt fully understand but we all bonded (if that makes sense). my friends there were all older than me (ranged from 18-86) and we all had different injuries but we all understood eachother and bonded instantly. they made getting through the sessions easier. if i didnt feel like going (which happened like everyday), they were the reasons i went. and they help if you get out of doing some things they would "accidently" misplace the buckets i used for contrast baths, keep the therapists busy so it would cut into my session a little bit, need me to help them do something, etc and i would do the same for them. haha, we were terrible. once, the pt had to separate me and mr harper (stroke) bc they realized we were up to something. but make sure if you go somewhere, have other people there. it helps a ton. and helps you adjust to people asking you whats wrong.


I hope this helps. Sorry if it doesn't. Good luck to both of you though.

Nikki