Hi

I am from the UK. Has anyone suggested splinting and epidural for the leg? or a knee brace? how does she find walking in the physio pool? or a caliper. Also if she is having such difficulty it might be worth using a standing frame for a bit - as I know there is some sort of research that until the leg gets used to bearing weight again the spasms will make the leg jump - haven't said that right but that's the basics. The balance thing makes sense to me... I first lost the balance with my legs and they would go from beneath me and now have no balance.

There are a couple of things that might help - for instace CBT might reduce some of the tension, what dose of baclofen is she on? I'm on 110 and it makes some difference. How about trihexyphenidryl? diazipam? temazepan? clonazepan? botox? meptazinol (pain killer), buprenophine? nortriptylene? HBOT? working with someone on pain/ stress relief - eg a pain psychologist who can help with meditation etc. Reiki? Eastern Medicine? (odd but that guy was the first guy to be able to move my knee at all), TENS, EMS,

I don't know what has been tried.

Are you on SKIPS? more of the parents might have ideas there.

Is Ali under a neurologist for the dystonia? something like sinnimet plus might help.

Ok that's all off the top of my head - but feel free to PM me if you want to ask more. Since my diagnosis in 2002 I have seen most of the UK specialists and several US drs as we have searched for a cure. I am just one of the unlucky ones who gets the stupid type of RSD. Have you considered Dr Curry? Some people I know consider him their saviour.

Love

Frogga xxxxx