As many of you will be aware myself and Alison have been worried about her PM treatment at our local childrens hospital. Alison has lost all confidence in the PMT and hates the thought of attending her appointments
Our major concerns are as follows:

Alison had a nerve block on 4th July and has been unable to walk since then (loss of balance and coordination). The hospital can't see this as a turning point - they basically put it down to confidence and psychological issues and our consultant says that he has never seen this happen before. The strange thing is that a friend of Alisons had a nerve block done by him two months previously and her foot rotated inwards, her leg turned blue and she had to be placed in a cast for nearly a month. Had we have known about this before hand we wouldn't have given him permission to do the block without careful consideration. It only came to light when I met her mother and was discussing what had happened to Alison.

Medication - Alison had been prescribed Amitriptyline in the early days and it did nothing for her. I told the consultant this but his advice was that the dosage had not been high enough. As a consequence Alison developed severe blurred vision and had a fall which meant the RSD spread to her arm (luckily now much recovered after 10 weeks intensive therapy at home). I sometimes worry about the level of these drugs that he is prescribing for a child and also the rapid increase in dosages over a period of a few days
Alison was also taken off Baclofen about a month ago as the Consultant wondered if it was causing tension in her muscles. I thought Baclofen was a muscle relaxant so did question this at the time but was told it can affect patients both ways. I do wonder if this is connected to the increase in pain if the muscles are now contracting more and causing the pain to worsen

Forget the leg - lets concentrate on the arm !!! For the whole of the ten weeks when the arm was painful and dystonic the staff completely forgot about Alisons leg. It was as though they knew there was nothing they could do so they focussed on something else. Luckily I kept Alison weight bearing as much as I could so things didn't worsen. We are told that if she puts some weight through her heel it will stop the spasms but Alison has been doing this for the last four months and if anything they have increased in frequncy and duration

Progress - My MAJOR concern or wish if you like is that Alison had never been admitted into this particular hospitals care. Basically she walked into the hospital on crutches with a pain score of 7 out of ten and now cannot walk and has a pain score of 9. It sometimes makes me wonder if she would still be walking without the block and their intervention. Alison just wants to get back to where she was at the start but four months on we are in a worse situation that we were on admission

Recovery / Remission Rates - As you would expect, I ask our PMT about these all the time and the resonses vary depending on the direction of the wind !!! I cannot pin them down to any quantifiable figures - ie how many children have gone into remission, how many have improved slightly, how many still have flares or have worsened. They want us to speak to other young people and their families but I do not belive I will get a balance opinion as they only want to put us in contact with the success stories and not the ones receiving ongoing treatment. They also only treat 2 patients a year with RSD so it does concern me as to the level of experience they have in dealing with my daughters case - in particular the violent spasms and dystonia (which the consultant admits to seeing only once before)

I would basically like to seek a second opinion elsewhere, particularly at a centre who treat more than 2 patients a year with RSD. The stumbling block is that Alison is only 12 and must stay under the care of one of our childrens hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!
I need to go into Wednesdays meeting with a clear head and a rational approach. At the moment I am so upset for my daughter and the fact that I took her to a hospital expecting them to make her better but that she has, in fact, got worse
How would you approach this and do you think my worries are realistic

Any advice would be welcome - particularly from people who have sought or are actively seeking a second opinion

Many thanks
Andrea