Hi Frogga
Thanks for posting - I thought you were on holiday!!!!
In your post you asked a number of questions which I'll try my best to answer
Crutches - Alison uses normal crutches, not the gutter type. I suppose this was because she had full use of her hands when they were issued. There has always been a problem in that Alisons hand become sore and her arms become tired basically because much of ther weight has been transferred through her hands for months !!! Do you think a gutter crutch would help...? I'm sure it would be a safer option as I often have to prise her thumb and forefinger apart to get some sort of grip on the crutch
That leads to your Second Suggestion - Getting the hand out of spasm. In the first few days after the injury this was possible. My grandma had a similar problem in her hand and was made a resting splint which we managed to use for a few days. Unfortunately each time we took her hand out of the splint to use the crutches it was harder to get it back on there until it became impossible. I have tried numerous methods to pull the hand out of spasm but without sucess. The hospital mentioned splintng it under general anaesthetic couls be the way to go ...so we'll see
Next Balance Problems - I have noticed that Alison can balance on her crutches for quite a while (a minute or so) but that the minute she attempts any form of movement her balance is completely lost and she stumbles. Luckily she hasn't fallen on her crutches yet as I am there to catch her !!!!
Her left leg seems to have lost all sense of coordination
Swimming - Alison used to love going swimming but we can't manage this anymore as getting her into and out of the pool is impossible without specialist equipment. I am aware that swimming would be excellent therapy but need advice on any centres in our area which have such facilities
Bath Pain Management Unit - I have looked at this an will be drafting a letter to my GP to ask for a referral here. I shall also be asking Alisons Pain Management Consultant if her can provide a referral here as well as providing me with a referral for a second opinion !!! Frogga - I understand you live in the North of England - have you any recommendations as to who may be the best Consultant / Hospital to see to get this as I'm seriously worried that Sheffield Childrens Hospital do not have enough experience of treating children with RSD (They have about 4-5 children on their books at the moment)
If I appear to be coping well with this illness its mainly because I was a carer from the age of 12 for my mum who had progressive MS. She died in 2001 but many of the problems Alison faces I have experience of dealing with on a daily basis as both present similarly.
I was aware that Baclofen would help to relax the muscle spasms and requested this on several occassions in the early days but was told Alison did not need it. Amazingly it was the first drug she was prescribed once there was a suggestion that she had RSD and it is the only drug she is still on from those originally prescribed - strangely enough it has never been increased although the spasms have worsened over the past couple of months. I am aware that Baclofen will help me to work "with" the spasms to gain movement as my mum was one of the first people with MS in the UK to be fitted with a Baclofen Infusion Pump which worked wonders for her for a number of years
Can anyone advise of their experiences using Baclofen for spasm and whether the dosage of 5mg 3 times daily is adequate...?
Many Thanks
Andrea

Hiya

Sounds like you are in a similar position to my mum. She cared for her mother from the age of 13 or so after Granny had her spine broken after a quadraplegic she was dressing fell on her (I know. My family is infamous for stupid accidents..). So mum has also been through this lot before... and in many ways it does mean that she a) knows how hard and mean she has to be for instance with desense (I'm a quad with almost no voluntary movement) or pulling the spasms out (more on that later) or any of the rest of the stuff! and it means that she doesn I know with mum I do feel very guilty that she is having to go through all of this again... but I suppose it's real life and life just is not fair. I don't know if it makes it easier for mum or not but it seems unfair that some people end up having to take over the carer role... and sometimes it feels like mum is cursed by it! However.. I don't know if you find this, but I know that mum doesn't panic particulary anymore and things that might seem huge obstacles to others aren't to us anymore. If that makes any sort of sense?

Crutches - gutter crutches would probaly be useful also as they have a wider surface area there will be less pressure overall and almost none (none?) through the wrist. It could actually be the crutches causing some of the issue - long term use of the UK NHS ones can cause nerve damage etc.. so trying them could be worth a try. You can also get gutter walking frames which are taller and more supportive than the normal frames. (Can you tell most of my family are nurses?). Also it could be worth looking at arthritis crutches as well - far thicker handles so would also act as a form of cone splint.. just a thought.
I had a pair similarish to these http://www.sportstek.net/rgc.htm
but heavily padded. by physios/ OTs. I can't find the picture of the frame - but it's just the same idea just on a walking frame thing.

Swimming - two things I have found. 1) I think there is a law which means that swimming pools must be accessible through the use of a poolside chair hoist. 2) Lifeguards are normally awesome. At the pool at home they will spinal board lift me in and out and the pool I use when I'm at uni has just had a sling adaption placed so they can chuck me in and out of the pool using my sling which is alot simpler than boards! (though both pool have seat hoists as well) However I have NEVER had a problem with lifeguards helping me in or out. And when I wasn't as bad as I am now they used to be awesome using the chair lift thing. I have also found that almost all the lifeguards will lift me as well if needs must. You might be able to find a special school with a heated pool that is open in the evenings or just ring round the local pools they are bound to have access.

Spasms. 5mg of baclofen tds is a tiny tiny dose. You can take up to 110mg a day (what I am on) and I also take Benzhexol (Trihexyphenidryl) and diazipam as well as my other RSD meds. I have found Benzhexol works well for me, if I don't take it then my dystonia really goes mad I think it works better than baclofen.. but I have ended up on a very high dose of it as the low/ normal doses just didn't touch the dystonia. Also... I was wondering whether Sinnimet plus has been suggested? If the spasms are dystonic then maybe increasing the amount of dopamine might help?

What about botox? It has really helped my thumbs - (the contractures have dislocated them over the backs of my hands etc and it has helped with it so could be worth a try). I do know how hard they are to break... even with 30 stone bouncing on my knee we can't straighten it, or bend my elbows etc... my best mates at uni are mostly all huge broad shouldered (male) rugby players and they find the spasms almost impossible to get out.. so I can DEFINETLY empathise!!!

Hospitals. I'm actually from Suffolk but have been treated under Hope, Bath, Addenbrookes, West Suffolk, Colchester, Kings London... probaly more if I could be bothered to think about it... (made the mistake of searching for a magic cure.. and believing a doctor somewhere would have the magic potion that would clear it all up instantly..). I'm now treated under Colchester, Kings and Bath and am waiting for a referral about a ketamine/ baclofen spinal pump to Basildon somewhere. Pumps... they are NOT keen on giving them out because of surgery and RSD. They are only just suggesting one to me 5 1/2 years into RSD and about 5 years since the dystonia started taking over.

In my personal opinion Bath PMP may be a good place to go.. they won't cure the RSD but they can make it alot easier to deal with - I never went on the program but that's what I have heard from others. Nottingham children hospital (I think?) is supposed to be very good, there is a great neuro at AlderHey in Liverpool who deals with RSD/dystonia in paeds also apparently Bristol childrens hospital (I'm on a UK site for teenagers with RSD). From what I have heard I would avoid Great Ormond street with a passion I really really would!!! They appear to be very keen to focus on the psychaitric causes (!?!?!) of RSD. If you are interested I can email/ PM you more info on them. You might be interested in SKIPS (though this website is very good for support/ information on RSD it is primarily American patients whereas SKIPS has the UK paediatric patients and parents who may be more helpful than I can be as they have actually been under Alderhey etc).

Oh yes. Have you tried HBOT?

Ok take care... I am in a haze of utter tiredness and pain at the moment so I hope this hasn't come out as gobblygook...

Love and gentle hugs to you all.

Frogga xxxxxxxx

Andrea,
Iam so sorry for what your daughter is going through. She is just too young. God Bless her. When I first got the rsd from a hip replacement my siatic nerve was damaged during the operation. Right away I had right foot drop. My foot would curl right up almost in half. The pain was nothing I had ever felt before. My family would have to slowly massage it out. Leaving it curled up was not an option.The pain had me screaming until they fixed it. It will be hard for her to have this done, but it must be done. I've noticed in the past 6 months that my balance is very bad. Even with the crutches i've been falling. I havn't had any blocks for 2yrs now. Iam hoping its not the rsd.
Please tell your daughter I think she is amazing. To be that young and to have to put up with what she does. I'll be praying for her and you.

Sue K.