Cognitive impairment

Ask our experts here about activity management in children with ME/CFS.

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by CFS.ME Mum on Thu Aug 15, 2013 11:11 pm

Cognitive impairment

My 9 year old developed CFS/ME following glandular fever when he was 6. We have established a good sleep routine and many of his symptoms (pain, sore throat, inability to walk, etc) have all improved and are only present when he has over exertion or has another illness present. However his ability to concentrate, read, write, etc - essentially anything cognitive - is still very much affected. His schooling has been hugely reduced. He has a home tutor but he struggles to do the normal approach to learning - even one simple maths question or reading a paragraph of text out loud can cause headaches, increased pallor, etc. He attends school on a regular basis but this is for social contact only. How do we help him with this side of things? Is it ok for there to be concessions/help in place to help with starting to study again such as having a scribe or someone read out loud?

I understand the concept of pacing and slowly building up and feel we have managed this well in other areas of life such as sleep, mobility, etc but the cognitive side of things are still severe and we find concentration/normal learning causes the stability achieved in other areas to be unsettled again.

I also read in some research that boys are more commonly affected cognitively than girls - is this the case? Are the symptoms he is experiencing normal or should we be concerned? Just to add that prior to this he was academically a very high achiever and had no learning difficulties.

With thanks.

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by onlyme2013 on Fri Aug 16, 2013 9:52 am

Re: Cognitive impairment

Dear CFS.ME Mum, we are having exactly the same problems. My son said that when he concentrates for too long "it's like my brain is on fire". We know when a relapse is likely as his symptoms return or get worse, eg joint pains when he's done too much exercise (or is it activity!?), headaches when he's done too much cognitive work. I've seen my son turn white and end up with his head on the table after five minutes of school work (we stopped obviously).
This forum has been useful as it's helped me to look back over his illness, and I really appreciate the advice from the other sufferers on here, I can see that he was doing best when we paced and listened to his body. It seems that we've actually restricted his life by trying to stick to such a prescribed get program as it leaves him too weak to enjoy anything (and he just gets through the day rather than enjoy it)- that's no way for an ill child to live.
I think what you're describing is normal for this illness because I've heard similar things from others. Someone on here suggested TYMES Trust (not sure if they're involved with this forum? can't see them mentioned?) and their literature helped clarify a lot for me, might be worth a look.

All the best, you have our best wishes.

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by Valentijn on Fri Aug 16, 2013 2:22 pm

Re: Cognitive impairment

Something a lot of people (even adults) have trouble pinning down as a symptom is orthostatic intolerance. Studies have shown that a lot of ME/CFS patients have it, often resulting in low blood pressure and/or pulse pressure after being upright for too long.

Doctors can diagnose it and treat it, but usually have no idea it even exists! If orthostatic intolerance is part of the problem, it'll be easier to think when laying down a lot.

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by miazulME on Fri Aug 16, 2013 3:54 pm

Re: Cognitive impairment

my son had a specific session with his clinical psychologist to help with his cognitive problems who gave him specific strategies to cope with school work and concentration and found it quite useful. might be worth asking if you have any access to clinical psychology

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by MichaelC on Fri Aug 16, 2013 4:17 pm

Re: Cognitive impairment

AYME (Association for Young People with ME)

08451 23 23 89

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by Bluebottle on Fri Aug 16, 2013 8:40 pm

Re: Cognitive impairment

this is an excellent organisation to turn to for advice:

The Young ME Sufferers Trust
Registered Charity 1080985

Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Dept of Health Report on CFS/ME

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by CFS.ME Mum on Fri Aug 16, 2013 9:39 pm

Re: Cognitive impairment

Dear All,

It is interesting to hear that cognitive problems are sometimes the last to resolve.

I have been in contact with both AYME and TYMES Trust. I found that with TYMES Trust their literature is very helpful and the best we have found so far for CFS/ME and education. And for AYME I have found their helpline very useful for discussing whether the education approach we have is a good starting point. AYME have given me confidence to make certain requests and also suggested ideas to try such as breaking up his home tuition with a break, starting with topic work that he enjoys and putting the normal academic work to one side for now.

Our child is being seen by a CFS/ME clinic. They said that the brain is muscle and that like his other muscles the brain is deconditioned as it has not been used for a while. I understand the concept of this but struggle with the severity of symptoms he has when attempting studying and worry about him worsening. The CFS/ME clinic said his worsening of symptoms are not a relapse but a sign he is not used to using this particular muscle and to persevere.

I have wondered whether there is any benefit to suggesting stopping education for a while and whether rest from this type of cognitive activity would be beneficial or, as I have read elsewhere and also on this clinic, is rest only beneficial during the initial onset stage?

Thank you to everyone who replied. It is appreciated.

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Dr Caroline Grayson
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by Dr Caroline Grayson on Fri Aug 16, 2013 11:58 pm

Re: Cognitive impairment

Cognitive impairment as you describe is a common symptom and has been described as "brain fog".It is important that teachers and tutors are aware of this.It is something which improves as symptoms settle.
Older children sitting exams are entitled to concessions including access to rest breaks/extra time/ timing of exams and sitting exams in a quiet area separate from the main year group if needed
I have included the link to the paper written about memory problems in children. I haven't been able to confirm whether there are any differences between boys and girls. From the paper the numbers are too small and from my clinical practice its something I commonly see in both boys and girls.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

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