Search found 21 matches

Search found 21 matches
by onlyme2013
Thu Aug 15, 2013 3:19 pm
Forum: physical activity & exercise
Topic: GET - useful or risky?
Replies: 40
Views: 20772

Re: GET - useful or risky?

Janancee I cant thank you enough. It's very kind of everyone on here to offer their advice.
by onlyme2013
Thu Aug 15, 2013 2:22 pm
Forum: physical activity & exercise
Topic: GET - useful or risky?
Replies: 40
Views: 20772

Re: GET - useful or risky?

Janancee, your post is very interesting to me. I feel that GET is making my son worse. I know Jessica mentioned 'stabilising' at activity levels but he only stabilises when we stop GET and then it takes weeks/months for him to recover enough to re-start; then he crashes again after no more than two ...
by onlyme2013
Thu Aug 15, 2013 1:42 pm
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10407

Re: Activity management

Bluebottle, thank you for the TYMES Trust suggestion. I found a great document on their website re relapses which clarified a few things.

I'm still really grateful for the advice on here and would be grateful for any answers on my inflammation/infections and GET query. Thank you.
by onlyme2013
Thu Aug 15, 2013 12:37 pm
Forum: physical activity & exercise
Topic: GET - useful or risky?
Replies: 40
Views: 20772

Re: GET - useful or risky?

Hi Jessica, the reason for each setback every few weeks is the increased activity. If we stop the activity he doesn't relapse. However, the focus is purely on "getting him back into school" and the school are focusing purely on the GET program and asking why he's not back full-time yet. I'...
by onlyme2013
Thu Aug 15, 2013 10:50 am
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10407

Re: Activity management

Thank you for the response. My problem is that we are essentially being told to ignore the evidence before our own eyes: he is made worse by activity. He gets better when he is allowed to rest and pace himself (at his own pace). So, on this instance, would you recommend we continue on GET or allow h...
by onlyme2013
Wed Aug 14, 2013 9:48 pm
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10407

Re: Activity management

Thanks for the replies.
I think it's helpful to get responses from other parents/sufferers - most who are experts themselves having lived with the illness for so long - I hope that remains the case for the duration of this clinic.
by onlyme2013
Wed Aug 14, 2013 6:25 pm
Forum: physical activity & exercise
Topic: Harmful Excercise
Replies: 14
Views: 10951

Re: Harmful Excercise

My son is definitely on a Graded Exercise Program and he relapses every few weeks. Are you suggesting that this is the correct outcome and we are to continue in this way?
by onlyme2013
Wed Aug 14, 2013 6:07 pm
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10407

Re: Activity management

Thanks Bluebottle that's really interesting. I will contact the tymes trust and ask for some advice. I'm a bit disappointed that no-one got back to me on here. I've asked the same question in two different threads as well!
by onlyme2013
Wed Aug 14, 2013 1:16 pm
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10407

Re: Activity management

Thank you so much for the reply. I'm really keen to get as much feedback on whether the relapses will stop or if it will just continue, also I'm concerned as he seems to take longer to recover with each relapse. Surely that can't be doing his health any good at all! I've also asked my question on an...
by onlyme2013
Wed Aug 14, 2013 1:13 pm
Forum: physical activity & exercise
Topic: GET - useful or risky?
Replies: 40
Views: 20772

Re: GET - useful or risky?

Hi Jessica, I hope you won't mind me asking a question as this thread seems to cover a lot of the questions I have in relation to activity and my child. We are on a GET program for him but he is relapsing every few weeks after continuous increased activity (which is prescribed on the GET program), t...
Search found 21 matches