activity management in children

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GET program in young child

Postby onlyme2013 on Thu Aug 15, 2013 8:14 pm

Hello,

Just incase my questions get missed in the bustle of the other sections I thought I would repeat it here, in the correct place.

To recap: young son, ill for many years, diagnosis ME. Relapses constantly after a few weeks of GET. Enforced rest period follows as too ill to do anything else. Then re-starts GET program and relapses. Continue for over a year.
The GET is causing the relapses as there is nothing else occurring at the same time.
School is trying to force a reintegration and are solely focused on the GET program and asking "why isn't he back in school full-time" and medical professionals refuse to offer a letter confirming that ME is a fluctuating illness with relapses etc that make adhering to a strict timetable almost impossible.

My son's bloods show inflammation and infection: how is the GET helping that when there are no other medical interventions?
GET seems to making him worse and when he relapses his symptoms all get worse. What damage is being done to him on each relapse?

I really would appreciate some advice.
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Re: GET program in young child

Postby Dr Caroline Grayson on Thu Aug 15, 2013 10:19 pm

I am unsure what the specific abnormalities in your son's blood tests are but for a diagnosis of CFS/ME there has to be no evidence of any other cause for the symptoms such as infection or inflammation.
It sounds like your son is showing classical "boom and bust" type presentation whereby on some days he is managing to carry out some activities and other days when he is managing very little and it is important to set a base line activity which he can sustain every day consistently before increasing this.
It is crucial to look at your son's timetable in school and look at the possibility of having a restricted timetable when he may start school later or finish earlier with the aim to be in school every day and then build this up gradually. It is important that school is aware that CFSME is a fluctuating condition characterised by relapses which can be triggered by infection/ stress etc and that during a relapse there will need to be a scaling back on activity but for this to be increased back to previous levels when symptoms are improving
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Re: GET program in young child

Postby ME Mum LTS on Fri Aug 16, 2013 12:52 am

I would send the school and GP a copy of the NICE Guidelines on CFS/ME.
That clearly states the GET and CBT are to help manage the condition for those not severely affected. It is not a cure and it is to be suitably planned to the individual patient needs.
Also there is a document that you can find through TYMES trust called
"Ensuring a good education for children who cannot attend school because of health needs
Statutory guidance for local authorities January 2013"
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Re: GET program in young child

Postby onlyme2013 on Fri Aug 16, 2013 8:04 am

Thanks ME Mum. I had a good look on the TYMES Trust website last night and it helped to clarify things for me. I will speak to them today hopefully. Their literature on education and why not to push children with ME made sense to me, and it mirrors exactly what is happening to us, so I think they might be who we need to speak to.

Thanks again.
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Re: GET program in young child

Postby onlyme2013 on Fri Aug 16, 2013 8:56 am

I appreciate your reply but surely the emphasis should be on helping my son to recover from what is a physical illness rather than what keeps a school happy? The choice seems to be to either continue on a path that has serious consequences for his health or stop and let him recover.
The talk of activity versus GET is deeply unhelpful - though I do appreciate the efforts in trying to help us understand - but the misunderstandings must surely lie with the professioanals offering this service as one would rxpect them to know the difference?

Would you be able to point me to any research/studies showing outcomes of GET in children with ME (not CFS)? I would be grateful. If I could see that other children have responded well it might help.

Thank you.
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Re: GET program in young child

Postby miazulME on Fri Aug 16, 2013 3:48 pm

It's my understanding that PACE (the main trial used to justify GET in adults) has not been replicated in children. That's what my son's physio told me when I queried it.

I'm a physio by trade (but had little knowledge of in ME before my son became ill as I specialised in cardiac) but I hadn't heard of anything relating to GET in children.

Hope that's some help
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Re: GET program in young child

Postby onlyme2013 on Fri Aug 16, 2013 4:49 pm

Hello, thanks for the reply, much appreciated.

One thing confusing me about the expert's answers is the many references to "if you're crashing you need to investigate what else is going on" but surely the 'what else' is that you have ME and GET doesn't actually do anything about it?

I'd still be keen to get an answer on how GET is helping the inflammation and infections showing in my sons blood. Im worried about my child's health not trying to prove anyone wrong. I just want to make an informed decision on care for him.
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Re: GET program in young child

Postby miazulME on Fri Aug 16, 2013 5:16 pm

My understanding is that the premise of GET is that it addresses deconditioning but as far as I understand it doesn't make any claims re inflammation and infection and from my knowledge of physiology I'm not sure how it could do that.

I've done some looking into recommendations for "healthy" people and exercise and infection and generally it is not to be recommended. The PACE manual even advises against exercise when have infections I believe.

I would certainly ask your physio/consultant to explain clearly how they think it is addressing the inflammation/infections - ask them to write it down so you can remember and then check out in more detail when you get home

Hope that is of some help.
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Re: GET program in young child

Postby Dr Caroline Grayson on Sat Aug 17, 2013 12:14 am

I am unsure what the abnormalities are in your son's blood tests are as I would expect that blood tests should be normal for a diagnosis of CFS/ME.
Access to school and peer group are vitally important for a child's development and not just to keep schools happy. There will be some children who are unable to access school because of the severity of their symptoms but reintegration to school with a gradual phased return works well as symptoms improve. This may involve taking the session with the home tutor into school and then gradually accessing lessons and building up. Regular meetings with school/health professionals are important
Although NICE guidance recommends GET there has not been any specific research carried out in children but this is an area where future research is planned.
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