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