Hi - it's Alison here,
Many thanks for all your replies. We are hoping to see a new PM doctor and PT soon, but the problem is that Andreas Goebel (the doctor who they want me to see) only treats adults, so I am not sure whether he will be able to treat me
We don't want to say anything horrible to my Physiotherapist and PM doctor at the moment, because if I have any more problems with my foot I would have to go and see them. Once we see a new doctor we will tell the hospital what we think of them all.
My friend, Nicole, suffers from a neurological disorder (possibly RSD) in her knee and she sees the same pain team as me and she doesn't like them. Dr Goddard (my pain consultant) performed a nerve block on Nicole and it turned her foot inwards. We found this out 2 days after my nerve block went wrong.

Miss Irie:
From what I understand my Physiotherapist talks to my PM doctor every week to tell him how I am getting on, but the hospital never contact my GP (Doctor). I have not found a drug that helps take the pain away at the moment and I have tried Lyrica, Gapapentin, Paracetamol, Ibuprofen, Amitriptyline, Baclofen, Tramadol, and morphine The hospitals told me that if non of these drugs don't work then I will have to try Morphine and Ketamine

Thanks all
Love
Alison

Ali,
I can't understand why they would refer you to a Pain team who only treat adults when there are paediatric Pain teams available.
Seems to me that it could be a waste of time and would suggest it could be a good idea to call the doctors office before going to see her to check if an exception has been made just for you. I would hate to think that this would cause further delay for you.
Tayla

just a slightly different view on the question.. I know I have got very defensive when asked questions like that in the past - turns out after all the effort of creating hell finding out what and why they were asking me the questions it was because they actually wanted to check I was safe to be in the house on my own. It does feel very accusing when they ask things like that - as if they are trying to catch you out, that you are "pretending" etc but I know at least in my case they were just asking because they wanted to know if I needed someone in the house with me at all times or not.

Just a thought.

Love

Rosie xxxxx

I just wanted to say hi to you and say that I hope you are feeling better now since having this happen to you.

Also Frogga has a good point. I can remember being on the defensive with my PCP at times when he said something I didn't understand. I would get angry with him and then he would explain what he meant. So things can be taken wrong. She may have honestly just wanted to know if you had a plan if the house did catch on fire.

We lost a home to fire in 95. We weren't at home at the time but I do know it sure can happen.

What I have learned along the way in councelling with what people say is to try and look at things without being on the defensive so much and it has helped.

As far as fire, most people have plans of how to get out of a burning house but that doesn't always work either. I remember watching an older couple burn in a mobile home one time so I know what can happen in the spur of the moment.

Anyway, I do hope the Hbot works for you. We talked about that years ago on the TOS forum and I have met one person that had it done and it didn't help her with the RSD nor TOS but I also know that things have been updated today and they are getting better results with it. Do ask questions to people who have had it done and weigh the pros and cons. I do see it though as an oportunity to try something that might help you get better.

Ada

Just back from our Physio appointment.
This week we had a joint appointment with Alisons friend who also suffers from RSD.
The girls had a chat with the physio on their own then we had a short catch up with them individually before meeting up to discuss a way forward
The girls both got the impression in their session that they were using their problems as a way of getting out of PE and Alisons friend was asked if her ginger hair caused any problems at school that were worrying her.
We asked the Physio to clarify things and she basically said that she knew that during the recovery process there would be things worrying her and she was trying to identify these worries in order to address them. It turned out she meant did having to go back to PE worry them as she could arrange for this to be reintroduced slowly and was there any bullying that could cause problems.
It became apparent that the way in which the physio is communicating things to the two girls is getting misinterpreted.
Whilst she is trying to say that RSD is not in their heads, she knows that some of the psychological side effects or RSD need to be reduced - eg stress, anxiety, not having to worry about returning to PE at school until confident enough to resume, not having to worry about teasing or bullying etc
What the girls continue to hear is "You don't want to get better as it means you don't have to do PE", "You're not happy about going back to school as you're being bullied" etc etc etc
As parents we have expressed concern that two separate and intelligent girls who have in the past seen all members of the team individually are repeatedly hearing the wrong message from staff. They continue to believe that RSD is predominantly psychological and that they have underlying phsychological reasons for not wanting to get better. There has to be a problem in the way in which the description of what RSD is and how it effects them that is getting repeatedly mis-interpreted.
Whilst, after discussion, we as adults can understand the reason for the questions, the message is not simplified enough for our children to understand and as a consequence the message comes accross differently to them. It is sometimes extremely hard to understand RSD as an adult, so this must be so much more difficult for a child with limited life-experience.
The Physio has agreed to bring this up at their Team meeting tomorrow and look at the way in which they explain the illness to their patients and possibly meet again with the two girls in the future to ensure they clarify their message.
I am not sure if this will help as they both had bad experiences with previous hospitals and repeatedly heard "its all in your head" before diagnosis so it will be hard to regain their trust in the short term
As such we have decided that as both ourselves as parents and the girls as patients trust each other inplicitley, we will have one joint session of physio back at the hospital next week where we will ask the physios to show us a range of exercises, desensitisation methods etc and then we will try to arrange to meet a few times a week at each other homes to go through the exercises jointly and to support one another. This would mean that the girls will be doing the PT they require in familiar surroundings with people they trust and who understand their situation, instead of having the stress of travelling to hospital to work with a team they no longer trust.
We will still keep out appointments with the Consultant for purposes of medication and have more infrequent sessions with the physio to discuss progress. Hopefully this will help us to progress forward more quickly
Has anyone tried a simialr approach and did they find it useful
Love
Andrea

Hi Andrea,

I am quite surprised that they put so much responsibility on children to make decisions which they are not capable of making.
They need to realise that children of that age, despite appearing to be quite mature girls do not have the brain maturity that enables them to make properly informed decisions or to decipher all the options being put to them. For girls about 16-18 is the age when this part of the frontal lobe can cope and for boys it is often not before 19.
I don't know if the very best outcome could not be had if they were totally being dealt with properly trained paediatric Pain Team members who truly understand the implications of one being so young having to cope with a disease that even adults struggle so much with.
Take care
Tayla

Tayla
I have to agree with you that I would personally prefer to keep more frequent hospital appointments and still continue with the joint sessions at home.
The problem is that they both get so stressed out by the hospital PT sessions, the questions they are asked, and the way in which there is often no explanation for the question or the explanation is open to misinterpretation that they tend to be less responsive to the PT during the session and dread going. Often they are asked to do the PT sessions without the parents being present but this means that as the questions arise we are not able to reinforce the message in a way in which our children will understand what is actually being said and not what they think is said !!!
Our Consultant has explained that this is a problem he sees frequently and as young people mature, towards 15 or 16, they more readily understand their illness and the what will help them to recover
I have question whether this is directly influenced by the fact that the staffs explanation about RSD and the mechanisms of pain / recovery are far too difficult for anyone younger that 14/15 to understand and as a result should they be similfying their message even further
This wold account for the fact that although the Hospital have a good track record in sending RSD into remission, the recovery process can, in a lot of cases, be quite lengthy
I also think that the experiences before diagnosis played a large part in reinforcing the wrong message about RSD and it will take a long time for Alison and her friend to undo the damage done
I do hope that in time they will begin to understand the reasons behind the questions they are asked, and I hope that the hospital will also take a look at how they convey that message to the younger children they treat
Self belief and trust have to play a major part in the recovery process and I hope that, given time and space, Alison will begin to trust her team again

Hi Andrea,

I do hope that will be the outcome too!!
These professionals often just need to remember to adjust their explanations and expectations according to age!
They just have to realise it is often very hard to earn back the trust they have lost. A little forward thinking and they would save themselves a lot of work
Cheers
Tayla