[ali12]

Hi there - Ali's mum here
Just wanted to ask some advice before our next trip to the hospital on Tuesday of next week
Alison's RSD spread to her arm about 6 weeks ago after a fall getting out of the bath
Within a few days the hand was locked in a fist and she developed the dreaded burning pain
Her Pain Management Team looked at ways of releasing her fingers but could not as spasms kicked in each time they tried and as time has passed her nails are digging into her skin
Yesterday I had a phone call from the hospital asking if there was any change in the hand and inviting Alison to go into theatre on Tuesday in order for the hand to be opened, nails cut, cleaned and splinted under anaesthetic
Has anyone experienced something similar - what should we expect...?
From what I can gather from earlier discussions, the hospital are reluctant to place all of the lower arm in a splint as Alison still has limited movement in her wrist which they do not want to stop - they seemed to be talking about a splint accross her palm and extending down her fingers to try and open the hand that way
There is a question about how long this will stay on and whether it will be removable - the latter worries me as we were given a "night splint" in the ER but once it was taken off it was impossible to get it back on !!!
If we go for a fixed splint which will stay in place for at least a few days this also concerns me slightly as Alison has recently learnt how to push her wheelchair using her fist...giving her more independance. Splinting may hamper her ability to get around under her own steam and take us back a step in her current levels of independance
Also, Alison can still move her thumb enough to grip her crutches - even though her balance is really bad at the moment (I basically have to walk behind her and support her all the time). We have tried gutter frames etc but they have not been sucessful so crutches are the only method of keeping Alison walking at the moment - especially important as I am noticing her good leg is becomming weaker
I am worried that a splint placed on her hand may hamper her ability to use her crutches and that we may be causing problems in another area by trying to fix the problem in the hand
If anyone has experienced something similar I would love to hear from you with your thoughts on whether or not you felt that splinting was helpful.
Our Hospital Team has only dealt with about 20 children over the past 4 years with this condition so any information which would help both them and us would be welcome
Thanks
Andrea

[carose]

I have this problem in my hand, I get botox shots in my arm to help it relax. My Dr. uses a nerve conduction test to see exactly where the muscles are he needs to inject, so I am getting several injectings up my hand and arm at one visit. It works for me, but I have read it doesn't work for everyone. I soak my hand and arm in warm epsom salts. The best thing to do is fill the bathtub and put 2 cups of salt in, put both arms down into the water next to you body and move the good hand, try to do the same movements with the dystonia hand. This took me several months beore my dystonia hand had much movement in it, but it help me get movement back. I just close my eyes, rested and try not to get upset at first, I know easier said than done.If Ali can't take a bath than a large bucket or babybath would work. I know how awful the PAIN is in the hand or foot or where dystonia decides to hitsNo one should have to experience pain like this, but it is unthinkable to me in a young person. Please know your family is in my prayers Carose

[frogga]

What about using something like this? http://www.benefitsnowshop.co.uk/sho...&sectionId=493

Wouldn't stop thumb or wrist movement and you could deflate it to use the crutches and reinflate it later. You can then inflate it more at night etc etc and you should still be able to use the wheelchair with it.

I suppose you've done the traditional of hot water and epsom salts followed by a massage and bandage treatment. Or alteratively hot wax followed by bandage. As in shove the hand in hot water, stretch each finger as much as you can (easiest with 2 people, one to hold the wrist one to bend each finger) and then place a rolled up bandage into the fingers, or a sponge, or a flannel or something. My spasms are rock hard (as in we have broken fingers, thumbs etc when getting my splints on) but the hot water does seem to add something.

[tayla4me]

Hi there,
I am so sorry that you are having such a worrying time with Ali. My heart goes out to you.
There is so much documentation that RSD limbs should not be splinted, that they should be kept moving but when there is what sounds to be obvious dystonia then I think some type of splint is called for.
Allison is so young that it would be a shame for her to get better but have a non functioning hand due to it being allowed to become contracted.
I would be asking the hospital what are they going to do to help fix the problem rather than treat all the symptoms as they arise
Does she need a series of stellate ganglion blocks or brachial plexus blocks?
I do think going to theatre and having passive movements etc done on her hand is good and even if the splinting is only night time I do think it is imperative at this stage to prevent a situation that can't be reversed.
Botox is used quite often here on dystonic limbs and it is more often than not accompanied with splinting.
I have night time splints for both feet and arms---It has helped to prevent further disfigurement.
Wishing you heaps of luck at her hospital visit.
Love Tayla

[Sandel]

Hi there..
I have dystonia in my rt foot and so cannot give much advice except to say that the splint that Frogga sugested looks like it would be just what Ali needs (she could still have the functions you were afraid she'd loose). The inflatable part is ingenious as it can be inflated more as time progresses and hopefully get alot of function back in that hand too.

The botox is also another wonderful idea as the injections weaken temporarily the muscles and tendons that are locked in place. I have a girlfriend that says she has her life back because of Botox wich allows her normal head movement now, she gets her shots every three months I think (but that may be wrong my memorys a fog alot).

Good luck and healing hugz to all,
Sandra

[nikmcjo]

Hey. My left hand is currently locked tight into a fist where my nails are digging into my hand as well. I use either ace wrap (to keep nails out of palms) or a hand paddle which i cant wear long but it helps some.

hope this helps alison

nikki

[ali12]

Hi there- Ali's mum here
Alison went to theatre yesterday for a splint to be applied
The hand was opened fully and a splint moulded in theatre, however as soon as she came through to recovery and began to wake, the RSD and spasms kicked back in and drew the hand back into a partial fist, which is not quite as bad as before, but as her hand is fighting against the splint, she was given morphine for the pain
The doctors and physios are reassessing this morning but if the splint makes the pain unbearable without morphine it may have to be removed
I'll keep you posted on what happns later

[nikmcjo]

Im really sorry to hear about Ali.

You guys are in my prayers.

I hope things work out soon.

Hugs

Nikki

[ali12]

Hi there - Ali's mum again
The morning after the splint was applied the hand had managed to pull back into a tight fist again - exactly the same as before - so poor Alison had to go to theatre for nothing
We spent 6 hours yesterday with her physio and it took all that time for Alison to move her thumb approximately a quarter of an inch
Our physio says Alison has some of the worse tension she has ever seen in a child with RSD and we need to address this before we can make any inroads into the RSD - I've posted another thread about this so if you have any ideas on this I'd be grateful for your replies
Thanks
Andrea