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