Just to let you know that Alison is now out of hospital - all of the tests came back negative and the swelling is definitely due to the RSD and nothing sinister !!!
I can't begin to tell you how relieved we are
Her meds have been changed again - her tramadol has been increased and she is starting on Amitriptyline in place of the Gabapentin. She also takes Baclofen for major spasms in her foot and toes (a real party trick) and Ibuprofen
With regard to the weather being linked to the swelling I don't know if any of you have seen reports about the recent bad weather in the UK but large areas of the country have been flooded over the past month or so, with major flooding in our area just before Alison was diagnosed. Consequently the temperature hasn't been above 20 degrees centigrade in recent months so may be a contributory factor
Her Consultant thinks that the diagnosis of RSD coupled with the new medications, stress and anxiety of coming to terms with what the future may hold and the failed nerve block may all have played a part in Alisons ability to walk
He is hopeful that in time he will find a balance of medication and therapy that "unlocks" the door to her making some improvement but we must be patient which is difficult when all you want is to get back to a normal life
Thanks to everyone for your continued support - It means so much
Best Wishes
Andrea (Ali's Mum)

I hope things improve with the change of medicine! I know that baclofen has really helped me... I could barely walk because of major tremors (I used a walker in the house, wheelchair any other time), then I started this and I am almost walking unassisted!! I can also use my hands better and they are pretty steady- a lot less tremors! So, good luck!

The amitriptyline might help her sleep... I hope so!!!

I hope things improve, she is in my thoughts and prayers. She can email me whenever... she has my email address, and I know what it's like to be young with RSD... I am there right now.

Huge pain free hugs for Alison, and hang in there Mom!

Hi Andrea

The weather doesn't help does it. Where are you in the UK? I am SE UK. The swelling is always impressive. I just wanted to say again that Ali has a great chance of improving with appropriate physio etc. Hope that she is doing better.

Love

Frogga xxxxxx

PS There is a UK kids/ teens website for people with RSD if you want to join. Several parents with kids Ali's age with RSD are also there.