Child with possible ME: My 13 year old... - Myalgic Encephalo...

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Child with possible ME

Winegum2 profile image

My 13 year old son has been off school for the last 6 weeks with fatigue. It was initially triggered by as extreme eczema flare. He then became even worse a few weeks later when he came down with a cold. We are trying to get him to school just for break to see his friends, but even that is a struggle if he is feeling particularly tired. The GP has tested him for everything he can which has been negative (other than inflammation during his flare) and has referred him to a Paediatrician. The appointment isn't until January! I'd be interested in any experience or advice with diagnosis/treatment etc. particularly in children. Thanks

10 Replies

Hi Winegum2, tough situation - could this be a psychological reaction to the eczema? Did it impact severely on his self-esteem/self-image that it knocked him into a depressive funk? Is it a post viral malaise type thing? Is there some issue in the background at school and he's using this as an opportune moment to get away from it? It is tough because fatigue could be caused by any number of things.

The only other thing I can offer, (along with good vibes ) is to suggest you take a look here:

me-pedia.org/wiki/Canadian_...

This is the diagnostic guidance for M.E. and may give you some pointers.

Best of luck to you and your son.

Please contact the Children and Young people service at Action for M.E. they have a wealth of information and support available. Hope that this is useful to you.

My daughter has ME/CFS which started aged 7, and I also have the condition. My advice is based on our conditions it may be very different for your son. My advice would be :

- always err on the side of caution more rest is best

- pacing is key - try 20 minutes gentle activity like watching TV then lay down for 20 minutes with eyes closed (with music or audiobook if restless) It is important to be happy and relaxed during the rest phase otherwise it isn't rest. Change the times if more rest is needed. You are trying to find his energy envelope, there is more info here treatcfsfm.org/menubar-Find...

- don't worry about schooling it can be done later and it is easy to catch up but perhaps one of the 20 minute up sessions could be used to keep in touch with his favourite subject.

- remember there are 3 things that use energy, physical, brain and emotional. So for example playing video games uses up masses of energy. Finding low energy stuff to do can be a challenge. My daughter loved to go on a drive, it got her out of the house and didn't use too much energy.

Ten years on my daughter is in touch with some of the kids she met aged 13 at a paediatric clinic for ME/CFS. It seems those that did less seem to be in better health. This is not a big sample and might be coincidence but sometimes as a parent you need ammunition to help you resist all the people telling you that your child needs to be doing more.

My daughters paediatrician said there is evidence that children who get fatigue around the month of October tend to go on to make a full recovery. It seems an odd statistic but that is what he said.

Hi Winegum2,

My 12 year old daughter has ME/CFS, she was diagnosed by a paediatrician and then referred to the specialist Paediatric CFS clinic in Bath.

Even if you are not referred there, they have some lovely help sheets on their website which might help whilst you wait for your appointment:

ruh.nhs.uk/patients/service...

One of the sheets tells you what tests he should undergo to confirm the diagnosis. Has your GP done them all, if not maybe they would be willing to order them in advance of the paediatrician appointment?

I agree with the last post, don’t push him to do anything, let him rest for now. And don’t worry about school he’ll catch up.

I hope you’re coping okay too.

Best wishes

K

Thank you, that link is really helpful. We're in Gloucestershire, so we'll probably end up being referred to Bath. His referral to a Paediatrician in Gloucester has been moved to a couple of weeks time.

I’m so pleased the appointment has been moved forward. The diagnosis stage of any illness is very stressful so the quicker the better.

If the diagnosis is confirmed and you can be referred to Bath they are a great service, so supportive, and headed by one of the worlds experts in ME/CFS, so you’ll be in good hands.

If you are worried about school attendance check out IPSEA for what education he’s entitled to whilst he’s ill.

Take care

K

Has he been tested for coeliac? I only ask because my daughter wasn't the first couple of times round. As for coping in the early stages of CFS, I'm sure you are worried about missing school etc but please put all those worries aside and focus just on what he needs. CFS takes a long time to adjust to as a parent but the best advice I have been given is that you can't make it better but you can make it worse so just go with the flow.

Winegum2 profile image
Winegum2 in reply to gabbycat

Yes, he's been tested for Celiac, Lymes and Glandular Fever. All negative, although I know that none of these tests are 100% accurate!

Hi

Please contact the children’s services department at Action for M.E.

This used to be the children’s ME charity AYME, and has dedicated tailored services for children and young people.

They have a wealth of support and information they can give you to enable you to become informed and able to access the right care and treatment for your son, as well as how to talk to school, health services etc.

Hi, our daughter gradually over a period of 6 months became exhausted looking very drained and limited her enthusiasm for her dancing and ice skating... more and more time spent away from school, and when was in school was always being sent home. One thing we did notice was her allergies increasing , we are now over four years since this all first started and our daughter is on reduced hours perminantly, she has an epi pen as her allergies became life threatening, her eczema has flared on and off since,

It’s a long process getting any support for a child with exhaustion. Collect evidence, get school to record anything they notice any triggers, keep a diary. Believe me it helps . Good luck

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