[ali12]

Hi there
As you know, my 12 year old daugter Ali was recently diagnosed with RSD
I have quite a few concerns about her treatment so far and I'm hoping someone may be able to tell me their experiences before I see her Consultant next week
Alison was admitted to hospital at the end of June this year. During all the tests, assessments and therapy, Alison was able to walk around the hospital on crutches, albeit very slowly.
She had a guanethidine nerve block to her lower leg in early July and from the moment she came out of theatre has been unable to balance herself on her crutches. Consequently she is now in a wheelchair unless someone can support her on her crutches. The physios tried to get her to hop on one leg but she is so tired that the most she can string together unaided is about 5 steps which doesn't allow her freedom to move around herself
My first concern is has anyone experienced something similar after a nerve block as I can only assume that the block has something to do with the loss of balance as she walked to theatre but had no balance after the block. It seems too much of a coincidence to me !!!!
If the block has caused the balance problems will this be a temporary problem which will resolve itself once the drugs are out of her system...? Is it possible that the block went into the wrong area and blocked motor nerves rather than sympathetic nerves...?
I understand that RSD has two types of pain - sympathetically controlled pain which can be reduced by the use of blocks and independantly controlled pain which is not responsive to blocks. Does this mean my daughter has independantly controlled pain and does the type of pain have any bearing on recovery or remission rates...?
My second concern is that Alison now has lost the use of her right hand after a fall early last week and a resultant wrist sprain.
Over the weekend, as the swelling and bruising subsided, her hand began to clench into a fist and there is now no-way to open it. It is really difficult to prise her thumb and fingers apart to get them to fit the crutches. The wrist seems to have developed the same type of dystonia she has in her ankle but slightly more quickly. The hospital seem to think that this is a spread in her RSD and want us to go and see them next week. Could this be a spread and if so would it happen so quickly after an injury...?
Alison does have some pain in the arm but not as much as her leg - could it be that the Tramadol she takes is reducing pain in the arm at the moment...?
My biggest fear is how quickly things are getting worse at the moment .... Is this usual and should we see a stabilisation in her condition soon...? It there a "cut off point" at which things progress too far to improve fully...?
I am sorry to ask so many questions but need to have some advice before I see Alisons consultant next week