Ali's mum here again and desperate for some advice
Just back from hospital again where an effort to splint Alison's arm to release the dystonia in her hand was unsucessful
We spent six hours in physio yesterday and a couple of issues came up
Firstly balance - I know Alison has asked about this before but I want to ask again in the light of what I was told yesterday.
Alison has very severe balance problems, her left leg (the one with RSD) seems to shoot out in front of her whenever she tries to bear weight through it. This only happened after she had a guanethidine nerve block. I remember this distinclty as the day before the block she had a full assessment in physio and walked the whole length of the hospital unaided to the assessment room on crutches - also half an hour before the procedure she walked herself to the bathroom to get changed into her theatre gown
Following the block the problems happened immediately. It is almost as though her coordination has somehow been affected. My mum had MS and what I'm seeing Alisons leg do is not unlike the sort of things I saw happen with my mum
A lot of you out there said you had experienced similar problems with RSD affecting balance and even though I have shown these responses the Alison's Physios, they are adament that the balance problems are not connected directly to the RSD
Aa Alison's leg is extremely tense the physio has told me that with that amount of tension there is no way the leg should not be able to lock into position and support weight. Furthermore she has also said that any balance problems would be seen when in a sitting position and that as Alison doesn't fall when sitting that her balance is not a problem
Maybe I used the wrong word when I said balance, it is more of a coordination problem - Alison knows where she wants her legs to go but they just won't cooperate
The Physio suggested that the balance / coordination problem is caused by a lack of confidence in her ability to walk and in the ability of those helping her to keep her upright should she fall backwards.
Alison was quite upset by this as she really WANTS to walk and trusts me implicitly when I support her on her crutches. She makes a point of keeping her legs going as much as possible and we never resort to using the wheelchair in the house. To her it takes her back to the bad old days when the illness "was all in her head"
Secondly - Tension. Alison's physio says that she has only seen children with as much tension as Alison a few times in her career.
She believes that the tension is causing as just as many of the symptoms as the RSD and that it is acting as such a strong defence barrier that nothing will work at the moment. There is a need to break down this tension before we can progress and move forwards but at the moment I'm at a total loss as to what we can do to alleviate this.
The tension stems from a need to protect the affected limbs from any factor that may increase pain and therefore Alisons body draws up into quite a guarded position
I am also seeing a similar "fluttering" in the hand which seems to herald an underlying muscle spasm which I witnessed with the legs months before the spasms became visible and anyone took them seriously
I've already said a number of times that if we could just somehow find something to dull the pain we may stand a chance of making some progress. So far nothing has worked and even morphine given yesterday had no effect
The Physio has suggested that the RSD may have "jumped" accross from the sympathetic to the central nervous system as the medications and blocks targeted at the sympathetic nervous system have been so ineffective.
Has anyone any idea if any of this rings true as I am at a loss as to know what to believe with all this
My GP is currently on holiday but as soon as he returns I am thinking of asking him to provide us with a referral to another specialist pain centre - but this time one that deals with both Paediatric and Adult cases as they will have a wider range of experience
At the moment I feel as though nothing seems to be helping and I'm getting so many conflicting messages from Alisons Pain Team as to what the problem is - allthough they do all agree she is suffering from RSD
Any help, advice or similar experiences would be welcome as I'm always open to hear of new methods and therapies we could try - though please remeber we live in the UK so a lot of treatments aren't available to us
Thanks for listening
Andrea