Chronic Fatigue Syndrome

[shoppers]

I'm wondering if there's anyone who can talk to me about CFS in children. My son is 11 and has just been diagnosed. His school attendance is below 90% which is worrying in itself.
He's having roughly a day off School every week. School are being supportive but there is a lack of understanding of what CFS is. I get that because I'm still trying to get my head around it too.

DS has been referred to a multi disciplinary team who specialise in paediatric CFS. I'm sure we're lucky in that respect. But I'm not really sure what to expect going forward. I know CBT is involved.

As far as as his symptoms are concerned he is not at the bed ridden end of the spectrum, thank goodness. But his daily life is greatly impacted. He pretty much feels unwell daily. He's very pale and sickly looking most days. He gets frequent unexplained leg pain. He has upper respiratory allergic symptoms, irritable eyes, and eczema. And, just as worryingly, his mood is low generally. Perhaps that's to be expected given he feels ill most of the time.

If there's anyone reading this who has some experience I'd appreciate any advice or information you have to give.

Thank you.

Have you had his Vitamin D levels checked? And try supplementation with Omega 3's as well. Take a look at these websites: Mitoaction and UMDF . Mitochondrial disease/dysfunction is probably what's causing your ds' CFS. My ds has mitochondrial disease and CFS is one of his many symptoms. Look on the websites at the "mito-cocktail" which is a cocktail of supplements that help with mitochondrial function. They are all over the counter and really do help.

In addition, the difficult part is that you need to get them up and moving around because it regenerates their mitochondria. This is of course is easier said than done because they are too tired to move around and the pernicious thing about CFS is that sleep doesn't relieve the fatigue, but moderate exercise does.

I am so sorry for what you and your poor ds are going through. It's very very difficult. Getting my ds diagnosed with mitochondrial disease and onto the mito-cocktail really helped with all his symptoms and it was helpful to have an official diagnosis that the school and doctors could understand.
Do some googling of chronic fatigue and brain signals. It's super interesting what they're finding in the science. The current thought is that it's the brain misfiring and telling the body that the muscles are tired even though they aren't.

Thank you for your reply Sofia. I'll have a look at your links. That's the problem with this diagnosis. When you research it a multitude of diversions and interpretations come up. So as much as I read I just can't get a grip on it. Trouble is the medics seem to be in a similar position!

By the way he had comprehensive blood tests done. He was a low in vit D and has taken supplements for a couple of months. Those tests are due to be repeated soon. Thanks again.

I had CFS. I was treated by a hospital for a couple of years (CBT and physio). What really helped though was doing the Lightning Process (need to pay). It's brilliant and worth every penny for me ahs several people I know have really benefited (i did it on recommendation of 2 friends).

I was diagnosed at 12. I would now say it was low level, but at the time it felt horrific. Probably missed a similar amount of school, was certainly dead on my feet after a full day. I clearly remember my brother having to carry me up the stairs to bed.
Luckily I was quite academic, so the time off didn't cause major issues, schools were less bothered by attendance then.
My issues were more around homework, after a day at school there was often no chance at all of me doing more.
I was offered extra time for my GCSE'S. I refused this. Looking back this was stupid but I still did well.
I had a consultant at hospital but there was no real treatment they could offer. High dosage vitamin c helped

I now class myself as recovered, although I still have bad days and weeks.

My DD was diagnosed with CFS / ME 6 years ago, aged 12, following glandular fever. There is a fabulous support group on Facebook - Parents of children with M.E./CFS Support Group. (Sorry can't link as on phone) Feel free to PM if you want to chat

Another fab support group on facebook - Mothers of ME /CFS kids Great Britain

My ds was diagnosed with ME at 2yo. Still ongoing trying to get any support from secondary school as he starts year 9....actually going into school tomo before I spontaneously combust with their attitude.

Hi my daughter has CFS/ME and was diagnosed aged 11. She is now 14. There is a seriously fantastic group for parents on Facebook you should join. I have had no end of help and support and advice through the group. Its called Parents of Children with ME/CFS Support Group and is UK based. I don't know if this link will work www.facebook.com/groups/295809457153118/?fref=nf

There is a single dedicated charity in the UK for children with ME/CFS called The Tymes Trust www.tymestrust.org - they have extremely useful advice and information. Run by an ex-Headteacher who suffered from ME/CFS and who's husband is a GP. The ME Association is also a good source for information.

My best advice is that this is a serious illness and the key to your son staying at the milder end of the spectrum would be to do lots and lots of research into this illness. Also for him to rest as much as possible and to very gently pace himself with any mental and physical activity he does. Everyone's limits are different and he will learn his. Overdoing things will make him sicker. Unfortunately my daughters doctors were uneducated about this illness and so were we, and she was pushed through pain and lots of energetic physiotherapy, we also were advised to wake her up at set times and not let her nap. This was all bad advice and over the last two years she has deteriorated to being 50% bedbound and 100% housebound - from being able to attend school.

Many doctors and medics have very little, or very out of date knowledge of thi condition, so treat what you are told with caution and do your own research is probably the most sensible approach.

I don't know if we can direct message on here, but I am happy to talk about this illness with you. It is very isolating and scary, especially when you have a new diagnosis.