Hi all
Alison (my 12 year old daughter) asked me to drop you all a quick line and let you know how things are at the moment - all will become clear as to why she's not posting herself at the moment if you read down the message !!!!
Last time we posted it was because Alisons leg had swollen up really bad - sorry to report that theres no difference at the moment and its been two weeks so looks like it may be a long term problem
Went to see therapists last week and told them we were concerned about the loss of balance and problems walking since the block and being placed on the cocktail of meds - they advised to try and weight bear through the affected leg but if that wasn't possible to "hop" on the good leg - but thats keeps giving way under the strain after a few steps anyway so is not as easy as they make out in reality.
On the way home Alison suddenly said "Mum - my visions gone all blurry". We thought it would pass but 5 days later its still the same - there's no respite from it. Went to the Opticians yesterday for a routine check and he said her pupils were badly dilated and slow to react to light and it may be the amitriptylene she is taking hence I cut down the dosage to 20mg daily as the sight problems only surfaced when she began to take 30mg daily - No change at the moment but I know it will take a few days to get out of her system
I cannot speak to her Consultant about it at the moment either as he's on holiday until next week
As if this wasn't bad enough we had yet another major trauma yesterday - Alison slipped getting out of the bath and onto the bath seat and twisted and banged her right arm. I feel so guilty for not being there to help her but she has asked to do this herself as she feels she has very little privacy anywhere at the moment - and her upper body strength has not been too bad recently - Apparently the blurred vision made her misjudge wher the grab rails are !!!
She is now holding her arm really funny and can only grip lightly with her thumb and index finger - this is a real problem as she needs to grip and bear weight through her arms to get around on her crutches and also to steady herself when climbing the stairs on her bottom to get to the only bathroom in the house
I wanted to take her to A&E last night but she begged me to leave it till this morning to see if things improved as her last experience there was when she was starting with RSD and they told her she was faking it !!!
I have just checked on her this morning and things are no better so we'll be off the A&E just as soon as we are up and organised - hopefully it will just be a sprain though the practicalities of how we would cope if it isn't and the worry of the RSD spreading to her arm really bothers me
I will keep you all posted of how we go on today
Take Care - Alison and Andrea (Alisons Mum)

Andrea,

Thank you so much for the update. That was very nice of you to let all of us know how she's doing.

When you talked about blurry vision, I also had a reaction to a medication where my eyes were permanently dialated. I was taking cymbalta. I don't know if she's on that or not - or something similar. It did take quite a few weeks to get my vision back to normal. Even close to a month.

BTW, did you go on your vacation?

Please let Alison know that I'm thinking about her and to try to keep her chin up. You are amazingly strong, Andrea. I can't imagine what it must be like to see Alison in so much pain - and so young.

I hope that there is a support system for you both. If nothing else, every one of us here knows what the pain is like.

Wishing you good luck at the doctor,

Beth

I'm so sorry your little girl is going through so much right now. She is lucky though to have a mom who cares as much as you obviously do! It is beyond my realm of comprehension that a medical professional would actually accuse a 12yr. old of faking anything, that really adds insult to injury and it's too bad she was made to feel that way when she desparately needed help and understanding.

I hope your daughter has better days and soon. I will pray for you and your family and please tell her we are all wishing her well! Hopefully she will be like most other children who acquire rsd and simply recover, that would truly be a blessing and one I hope she is witness to it soon!

wishing you well,
jenny

Sorry I didn't post last night but it was late when we got back from the hospital
Good News - Alison's arm is not broken - Just badly sprained !!! Wow, what a relief !!!!
I was amazed that the doctor in our local A&E Department had actually heard of RSD even though he didn't understand it fullly
Alison has been referred to Fracture Clinic on Monday to check her progress - we are seeing the doctor who admitted her six weeks ago and who first suspected RSD and got us the transfer to the Pain Management Unit
Alison is really worried that she will develop RSD in her right arm as a result of the injury and I seem to think that concern is echoed by the staff at our local hospital - hence they are also arranging for her to see a physio who specialises in the rehabilitation of hands
They did ask that we keep the arm in a removable splint and elevate to reduce the swelling. My only concern is that they asked me to "ice" the arm at regular intervals and I know that is really bad for RSD - I know she hasn't got RSD in her arm but I feel like icing it may be an open invitation for RSD to come and join her there !!!
Have any of you had further injuries once you were diagnosed with RSD and how did you rehabilitate them. What are the chances of the RSD spreading to her arm following this recent injury ?
I will be contacting her Pain Management Team this morning to discuss the situation with them too
Many thanks for your help
Andrea & Alison

AWWWWW... I too, am so sorry to hear about poor Alison and all she is going through! Please tell her hello for us and that we care about her. She is in my thoughts and prayers. Alisons mom, If her arm swells up, or she complains a lot about it, please take her to the emerrgency room! ((Hugs to you both)) Love, Desi

Hi Alison and Andrea,

I would definitely not ice the arm. I think that would make things worse and probably not help immensely in the first place. I just wouldn't risk it. I'm glad you have researched RSD enough to know that.

I have not had a major injury since being diagnosed with RSD. So, I can't comment specifically about that. I do know that it does spread. Mine is spreading from my left arm to my right. If she does get RSD in her arm - you'll know it. She won't get better and develop the burning, etc. that she has in her RSD areas.

I really hope that it doesn't spread. That would be just aweful.

Thank you for the update. I was looking to see what happened.

Beth.

Just thought I would let you know that I had knee surgery back in 2003 and had to be on crutches for a while and could not put any weight on my hand because of pain, but the PT was able to attach something to my crutch so that I could still use it but without putting weight on my hand. It was attached to the crutch higher up and it had a place for me to rest my forearm and a handle with a bar up front of the rest for me to hang on to. It took away the pressure on my hand and just let me use my forearm for weight bearing. Don't know if this information will help or not, but good luck to you and your daughter. Both of you take care.

Tracy

Andrea,

Thanks for updating us on Alison. I am sorry to hear things aren't going too well. I hope things start improving, and I am glad to hear that her arm isn't broken!! I wouldn't ice the area, definitely not!

From my experience- any little injury, any thing (even no injury) would set off my RSD in a new area. When I had RSD in just my arms, I ran and the RSD spread to my legs... so really, anything can trigger a spread at times. An injury makes it more likely to spread, as it is aggravating the nerves in another area. Just like small aggrevation can make RSD worse in the already RSD areas.

I also deal with foggy/ blurry vision a lot, as well as double vision... some of it may be RSD or it could be medication side effects. My vision is worse in the morning.


I hope things start looking brighter for your little girl!!

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)

Hello Andrea,

So sorry poor Ali has been having a hard time lately.
My advice re her arm is that if there is any hint of there being a spread of the RSD then it would be so very beneficial for her to have a Stellate Ganglion block asap. Firstly it may help confirm the spread if it has and if so may nip it in the bud before her brain gets hold of it and runs with it.
Is there any way you can talk to the RSD physician at the Children's hospital earlier than planned?
I am a great one for nagging----amazing if you nag enough they will often move mountains for you just to keep you off their backs!
I hope all will be ok---just remember, she is young, she has lots going for her to get much better than she is now as long as she gets the correct care.
cheers Tayla