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Chronic Fatigue Syndrome in 10 year old, where to start?

(12 Posts)
KarrieC Mon 27-Nov-17 14:50:26

My son who is 10 has just been diagnosed with likely Chronic Fatigue, Just wondering if anyone else has experience of this with a child. Any advice or things i should be doing. He isn't able to attend school so i don't know what is going to happen there either. We are awaiting referral to Chronic Fatigue clinic so we are relying on anything we can find out on the internet for now. Any advice welcome.

butterfly56 Mon 27-Nov-17 15:11:38

Has he ever suffered a head injury?

www.dailymail.co.uk/health/article-2631263/How-doctors-failing-spot-brain-injury-30-000-cases-chronic-fatigue.html

QueenofWhatever Mon 27-Nov-17 17:41:08

Google Esther Crawley in Bath, she is the leading clinician in this field. Recent research has shown some surprising results:
adc.bmj.com/content/early/2017/09/20/archdischild-2017-313375

CFS/ME is highly politicised, so take what you read from individuals or pressure groups with a pinch of salt. Also, children with CFS/ME are different to adults,

building2017 Mon 27-Nov-17 20:48:06

Make sure you have his B12 levels tested. Low in the 'normal' reference range may still respond to treatment.

Tinselistacky Mon 27-Nov-17 20:49:04

My ds has ME and it's a battle at the moment. He is nearly 14.

mrsreynolds Tue 28-Nov-17 10:41:23

Rest
Rest
Rest
Vit d
B12
Omega fish oils- veg epa are best imo
You can do massage at home if he will let you.. .this can help if his bp is low (as mine was)
Amitriptyline helped me enormously with muscle and nerve pain but I'm not sure it's allowed for children
I would agree - get referred to an me/cfs clinic asap

BonnesVacances Tue 28-Nov-17 18:09:38

DD has CFS/ME so my heart goes out to you at the beginning of this incredibly hard journey.

I echo a PP. Rest, rest, rest and more rest. Don't try to push through it. Respect the body and have self-compassion.

It is an extremely controversial illness. Not so much in whether people believe is anymore, as the tide is turning on that, but in that there are so many different opinions about what to do, and of course every parent believes they're doing their best for their DC which may not be the same as another parent.

You'll have to do your own research and evaluate everything, even what the CFS clinic tells you. And as a PP has said, it's different in DC than in adults. My firm belief is that there are 3 or 4 different types of this illness so there isn't a one size fits all approach.

There's a very good Facebook group for Parents of Children with ME/CFS which I'd recommend joining. And Tymes Trust will help you on the school front.

But overall my advice would be to remember that you know your DC better than anyone and never doubt that. And that DC have a better chance of a full recovery than adults which will be your light at the end of the tunnel.

KarrieC Tue 28-Nov-17 18:48:13

Thanks for your messages. they are all helpful. i will look into all your ideas. Thanks so much BonnesVacances i will look up Tymes trust and the facebook group. It is a worry as i just don't know how long it is going to last. the consultant told us like it was good news he didn't have anything serious - isn't having my child exhausted to the point of not living their life for possibly years on end serious? Anyway i will try to remain positive and do whatever it takes to get him well. xxx

building2017 Tue 28-Nov-17 19:16:22

Absolute bullshit to be told it is nothing serious! I was on a mobility scooter and bed rest for literally years. Felt like I was buried alive.

My B12 was never clinically low but as soon as I started on injections (on advice of ME clinic) I improved and never looked back. Didn't work for friends with ME/CFS but low dose naltrexone (LDN) did. Don't be content with a dustbin diagnosis, keep asking for help on your child's behalf.

MynewnameisKy Wed 29-Nov-17 08:24:46

I have nothing positive to add but have two children with CFS. I live in Northern Ireland where there is no help or consultant.

It's a very serious diagnosis. Our whole lives are devastated by this.

Rufustherenegadereindeer1 Wed 29-Nov-17 08:29:43

Sorry karrie

Ive nothing to add but dd has just been diagnosed with this and we have been left to deal with it on our own

Ive got no idea where to start and im really quite annoyed, dh and i think slightly differently about it as well which i dont think is going to help longterm

Just want to lurk and learn

BonnesVacances Thu 30-Nov-17 07:48:39

I'd recommend getting yourself a copy of the ME Association's Purple book. You can also ask your GP/ paediatrician to get one (it's free for medical professionals). It's been genuinely very helpful for my own understanding of the illness, but it's also been good to take to meetings to evidence what I'm saying and the choices I'm making re next steps, investigations etc.

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