Thanks everyone for your concern and interest in Alison progress
Just to further update you all we went to see the Physios yesterday to try and get her hand moving
Over the past few days her fingers have begun to clench up into a fist and any attempt to straighten them is met by spasm and further tightening
Having explained all the problems we had with mis-treatment and mis-diagnosis last time the physio called the neuro physios and they in turn called the paedeatric neurologist
They all agreed that what they were seeing was not a normal response to a wrist sprain and they had never seen anything quite like it before !! They explained that they thought there was an underlying nuerological component to the problem but had never come accross RSD in their daily lives so couldn't be sure if that was the cause or whether it was something else
I explained that Alisons ankle had become "locked" in its outwardly rotated position within a week or so of the injury and that although there was slight movement there it would always return back that position until movement became less and less and eventually ceased. On both occasions there is movement in the limb whilst she is asleep, although sleep is quite limited these days.
The arm does seem to have progressed slightly more rapidly to this stage and Alison describes the pain as a dull aching with pins and needles through the fingers rather than the burining pain of her leg. I assume that the Tramadol she takes for her leg are dulling this pain in its early days
We are being referred back to her RSD Consultant at the Childrens Hospital but in the meantime I would be happy to hear from someone who has experienced the spread of the condition to another limb if they think this new setback is RSD related.
On a more positive note, Alisons eyesight has returned to near-normal after stepping down and stopping the Amitriptyline.
Finally, Alison is very much left to her own devices as regards therapy for much of the time - having monthly appointments
The Pain management side of things is also monthly and we seem to have made no progress at the moment in reducing her pain levels
There is a specialist Pain Management Centre in the UK which runs a three week intensive therapy course and seems to have quite good results in helping young people become more mobile and to cope with their illness in a more effective way.
My Area Health Authority are reluctant to send Alison there for treatment as the cost is very high
Have anyone been through similar programmes, were they beneficial and should we persue this with our Area Health Authority to try and secure funding for it
Any advice on best treatment options, spreading of RSD etc etc etc would be welcome
Many thanks
Andrea (Alisons mum)