Hiya

Sounds like you are in a similar position to my mum. She cared for her mother from the age of 13 or so after Granny had her spine broken after a quadraplegic she was dressing fell on her (I know. My family is infamous for stupid accidents..). So mum has also been through this lot before... and in many ways it does mean that she a) knows how hard and mean she has to be for instance with desense (I'm a quad with almost no voluntary movement) or pulling the spasms out (more on that later) or any of the rest of the stuff! and it means that she doesn I know with mum I do feel very guilty that she is having to go through all of this again... but I suppose it's real life and life just is not fair. I don't know if it makes it easier for mum or not but it seems unfair that some people end up having to take over the carer role... and sometimes it feels like mum is cursed by it! However.. I don't know if you find this, but I know that mum doesn't panic particulary anymore and things that might seem huge obstacles to others aren't to us anymore. If that makes any sort of sense?

Crutches - gutter crutches would probaly be useful also as they have a wider surface area there will be less pressure overall and almost none (none?) through the wrist. It could actually be the crutches causing some of the issue - long term use of the UK NHS ones can cause nerve damage etc.. so trying them could be worth a try. You can also get gutter walking frames which are taller and more supportive than the normal frames. (Can you tell most of my family are nurses?). Also it could be worth looking at arthritis crutches as well - far thicker handles so would also act as a form of cone splint.. just a thought.
I had a pair similarish to these http://www.sportstek.net/rgc.htm
but heavily padded. by physios/ OTs. I can't find the picture of the frame - but it's just the same idea just on a walking frame thing.

Swimming - two things I have found. 1) I think there is a law which means that swimming pools must be accessible through the use of a poolside chair hoist. 2) Lifeguards are normally awesome. At the pool at home they will spinal board lift me in and out and the pool I use when I'm at uni has just had a sling adaption placed so they can chuck me in and out of the pool using my sling which is alot simpler than boards! (though both pool have seat hoists as well) However I have NEVER had a problem with lifeguards helping me in or out. And when I wasn't as bad as I am now they used to be awesome using the chair lift thing. I have also found that almost all the lifeguards will lift me as well if needs must. You might be able to find a special school with a heated pool that is open in the evenings or just ring round the local pools they are bound to have access.

Spasms. 5mg of baclofen tds is a tiny tiny dose. You can take up to 110mg a day (what I am on) and I also take Benzhexol (Trihexyphenidryl) and diazipam as well as my other RSD meds. I have found Benzhexol works well for me, if I don't take it then my dystonia really goes mad I think it works better than baclofen.. but I have ended up on a very high dose of it as the low/ normal doses just didn't touch the dystonia. Also... I was wondering whether Sinnimet plus has been suggested? If the spasms are dystonic then maybe increasing the amount of dopamine might help?

What about botox? It has really helped my thumbs - (the contractures have dislocated them over the backs of my hands etc and it has helped with it so could be worth a try). I do know how hard they are to break... even with 30 stone bouncing on my knee we can't straighten it, or bend my elbows etc... my best mates at uni are mostly all huge broad shouldered (male) rugby players and they find the spasms almost impossible to get out.. so I can DEFINETLY empathise!!!

Hospitals. I'm actually from Suffolk but have been treated under Hope, Bath, Addenbrookes, West Suffolk, Colchester, Kings London... probaly more if I could be bothered to think about it... (made the mistake of searching for a magic cure.. and believing a doctor somewhere would have the magic potion that would clear it all up instantly..). I'm now treated under Colchester, Kings and Bath and am waiting for a referral about a ketamine/ baclofen spinal pump to Basildon somewhere. Pumps... they are NOT keen on giving them out because of surgery and RSD. They are only just suggesting one to me 5 1/2 years into RSD and about 5 years since the dystonia started taking over.

In my personal opinion Bath PMP may be a good place to go.. they won't cure the RSD but they can make it alot easier to deal with - I never went on the program but that's what I have heard from others. Nottingham children hospital (I think?) is supposed to be very good, there is a great neuro at AlderHey in Liverpool who deals with RSD/dystonia in paeds also apparently Bristol childrens hospital (I'm on a UK site for teenagers with RSD). From what I have heard I would avoid Great Ormond street with a passion I really really would!!! They appear to be very keen to focus on the psychaitric causes (!?!?!) of RSD. If you are interested I can email/ PM you more info on them. You might be interested in SKIPS (though this website is very good for support/ information on RSD it is primarily American patients whereas SKIPS has the UK paediatric patients and parents who may be more helpful than I can be as they have actually been under Alderhey etc).

Oh yes. Have you tried HBOT?

Ok take care... I am in a haze of utter tiredness and pain at the moment so I hope this hasn't come out as gobblygook...

Love and gentle hugs to you all.

Frogga xxxxxxxx