Hi all
Just brought Ali back from hospital and thought I'd take the opportunity to post
Ali is not happy with me at the moment, she feels I have let her down in todays meeting with the Consultant but she was asked to stay in Physio so has her own take on how things panned out. She is still adamant that she want to go elsewhere
I asked the Consultant about the problems following on from the nerve block and he said he had never experienced problems before with this block. I mentioned Alisons friend who had complications after a similar block but he didn't remember it and said he needed to look into what type of block she had. He did mention that sometimes people have wierd reactions to blocks without any apparent reason and that was why he was decided to hold off doing any more at the moment
I had a long conversation about the terminology used with regard to Alisons condition - eg Confidence issue, protecting herself. I said it made Alison think that what was happening was in her control. He did say the words were not meant to reflect this and that what was happening was the nervous systems reaction to events and was not under Alisons control which I asked him to tell Alison directly as no matter how many times I try to explain this she cannot grasp the concept.
With regard to the pain, he has suggested that we increase the Lyrica as Alison seems quite OK with that and she does have a lot of side effects with some other meds we have tried. If this doesn't work he will try ketomine and possibly Methodone but is worried that Alison body may not be able to tolerate them in the dosages she requires so we have to keep our fingers crossed that the Lyrica works
With regard to a second opinion he said it would be difficult to sort out as UK Pain Management Clinic do not usually take children into their care, especially when there are specialist paedeatric units. That said he will be asking some of his fellow Pain Council members if they will talk to us and it looks most likely that this will be in either London of Glasgow, both a four hour drive away.
The Consultant did say that the treatment regimes offered at each of these Centres were fairly standardised but I think Alisons whish to move is governed more by her not liking the staff at our current hospital and having had bad experiences with the block and medications administered thus far. My big worry is that this may also continue elsewhere and the reaction is actually aimed at the intensive PT which she finds so hard due to the inability to reduce her pain levels, would we find ourselves in a similar situation in a few months time
Once again it was stressed that actively researching Alisons condition and her memories of her grandmas nurological condition (MS) may not have helped and that it was possible that when the block failed to control her pain the body went into a protective mechanism which made if extremely difficult for her to walk. Personally I find all this a little hard to shake off the coincidence that all of this coincided with the block and that is one of the overriding reasons why I so desperately need to seek another opinion.
With regard to remission and recovery, the Consultant did say that it was his believe that PT and a return to normal levels of activity played a major role. He believes that some children are in the right mindset at onset to be able to follow the PT and push through the pain barrier to recover quite quickly whilst others find this extremely difficult. Of the patients he has treated over the past few years only one was passed into the care of an adult unit unable to walk, and she is now walking again. He did say that he may have come accross as too optimistic at the time the diagnosis was made but that the majority of young people find it hard to cope with the demans the treatment regime places on them until they are mature enough to cope and understand what is expected of them
Just wondered what anyone else thought of this - does it ring true or is Alison right to still have concerns
Many thanks
Andrea