[phpBB Debug] PHP Notice: in file [ROOT]/ext/valhallasoftware/talkhealth/event/main_listener.php on line 144: Undefined offset: 0
talkhealth forums • GET program in young child - Page 2
Page 2 of 2

Re: GET program in young child

Posted: Sat Aug 17, 2013 12:41 am
by onlyme2013
Dr Grayson,
Would I be correct in saying that I can choose to stop the suggested GET treatment plan - as there is no proof it works and I see evidence that it is making him worse - and that I should still be able to access other support services for my son such as home tuition and, for example, physio? It has been suggested to me that it must be 'all or nothing' and should I choose to 'not engage' I will subsequently lose all other support.

Thank you for the confirmation that GET has not been researched in children.

Re: GET program in young child

Posted: Sat Aug 17, 2013 1:55 pm
by miazulME
NICE guidance says you can choose to opt out of any element and the rest of your treatment should not suffer. Get the NICE guidance, highlight the section and use as required would be my suggestion.

The point made earlier about the need to include mental exertion as well as physical exertion is crucial and I think often overlooked. If you are going into school, it's a huge effort just to get there, walk around the site to the classroom before you have even started the mental exertion. One of the things we have managed to separate out is the fact that professionals are keen to keep children with ME in school so they are in contact with their friends but this should be considered separate from educational learning in my book. Current plan for my son is to go in for social contact and receive work to do at home for educational learning - might be worth trying to get something similar for your son.

Re: GET program in young child

Posted: Sat Aug 17, 2013 2:26 pm
by onlyme2013
Thank you MiazuIME. I read a very good document yesterday call '10 points on Education of children with ME' (or along those lines anyway) and I think I'll also bring that with me when I see the school and consultant.

The problem I also have is that the consultant is talking directly to the school but will not give me something to confirm that ME is fluctuating and sticking to rigid plans is almost setting my son up to fail. I've also printed off some of the experts comments on here ('it is fluctuating' 'GET hasn't been tested in children' etc) to bring with me and I'm hoping that will help.
Ultimately it's my decision - legally - as the parent and I only want what's best for my child, as we all do.

Thanks for the reply, much appreciated.