Just read the story about Kara with interest
It sounds very much like a programme we have in the UK run by Bath
There course is a 2-3 week intensive course in helping young people come to terms with and cope with the pain they have. They run intensive therapy sessions, psychology etc alongside each other and have a really good sucess rate
I would love to take Alison there but the British NHS system seems to constantly throw obstructions in our way - namely the £25,000 cost of treatment which will only be met by the NHS if there is not a suitable local provision. Personally I feel that although our local hospital have some experience in dealing with childhood RSD (20 cases in the last 4 years) Alison would be better helped by a facility which has a more wide ranging experience of the illness and how to channel treatments to get the best results. Unfortunately at the moment the NHS see the local facility as capable of meeting our needs but I don't intend to give up on this !!!!
When people talk about sucess over here in the UK they seem to talk about remission. It would seem that a lot of people still go on to get flares every so often but can apply the techniques they have learnt to speed up recovery. Eventually the flares get less and less as time passes. Alternatively some young people "settle" for a point in their recovery at which the pain is manageable and they can return to a lifestyle which suits them
In adults the recovery rate seems to be around 50% whereas in children it is more like 75%, although of the percentage of those who do not recover many go on to see varying degrees of improvement (I tend not to dwell on the fact that there is a slight possibility that things can get worse as the odds are stacked in our favour at the moment !!!)
Our hospital team have expalined that they see either a very quick recovery over a matter of days / weeks or alternatively the process can be more drawn out with the young person tending to resign themselves to having the illness until the reach mid to late teens - I suppose it could be something to do with having the maturity to understand that they have to be the driving force behind the therapy and that they can adopt a "no pain, no gain" attitide (or at least thats what our physios and psychologist seem to think)
The problem I have in trying to cope with this illness is the fact that every sufferer is different - there are no guidelines to when and to what extent recovery will take. We can never be sure what each day will hold.
All we can do is be there to offer love and support along the way
Best wishes and thanks again
Andrea