Exhausted 9 year old boy - any thoughts?

[Kizzandra]

DS aged 9 has been excessively tired for the last 12 months. He has a good 12 hours per night of quality sleep but still will drop off on way home from school and at the weekends will easily sleep for a couple of hours during the afternoon. Before this he was active, still not one for late nights but could certainly keep up with peers and manage to stay up past normal bedtime if visiting friends for example.

He had bloods taken last year, a minor iron deficiency was flagged but not seen as serious. We've been giving him Floridex to help this but should also point out that he has a healthy and varied diet with fish, red meat, green veg etc.

We've seen a paediatrician 4 times now and the opinion is that it's a "growth spurt" and "possibly post viral". (The virus must have been very slight as it certainly wasn't noticed by us prior to him being tired.)The advice was that he needed to be regarded ie increase his activity and he will gradually get better.

When we do this, he just gets more tired and it knocks on into the school week.

It's not normal, I do feel fobbed off by the Paediatrician we've seen to an extent.

Has anyone experienced anything similar? We've been for blood tests this morning again, really as I can't think what else to do and it's 12 months since the last lot.

This started March 15, he had the nasal Flu vaccine in December 14 and was off school after that. Could there be a link? I'm not usually anti-vaccine but it's the only thing I can think of that could have contributed.

He's missing out on so much that and I just want him back to normal!

Thanks in advance for your input

[Eve]

My Ds was like this, tired, run down, frequent colds and coughs.

Completely dismissed by various doctors, til he had a chest infection whilst abroad and doctor there mentioned allergies.

Private consultation back home identified severe dust mite allergy and anti histimines sort it now.

[Kizzandra]

Yes, I am feeling rather dismissed by doc - not by GP but by the Paediatrician we've seen.

He doesn't really have any other symptoms at all - no colds, coughs etc but will keep the allergy in mind. thanks.

[MuddhaOfSuburbia]

Could be coeliac disease?

Mine didn't show any obvious bowel symptoms for years, just tiredness/dizziness

[Kizzandra]

We've done the blood test for Coeliac as my mum has it so it was kind of our first port of call. I think there are two types of blood test though and I'm not convinced they've done both! Our GP is nice but can be vague and you end up wondering who is the doctor!

[AntiquityReRises]

Asthma been ruled out?

[Comeonmommy]

Definitely get a second opinion and a third and fourth until somebody listens and gives you detailed details of what the plan is.

I am no way an expert but what about ME?

I hope you and your ds get the answers you need

[EDisFunny]

Has his blood sugar been checked regularly? Is he drinking a lot? It took a year for doctor's to diagnose my sister with Type 1 diabetes because her original first blood test didn't indicate diabetes and they didn't test after that.

[TheAussieProject]

Have you tested his lung capacity, it's done in 5 seconds with a flow meter every GP / doctor has. Your DS has to blow in a paper tube and it shows his lung capacity. When my son did it, I was so dismissive, thinking asthmatic, no way, and then his lungs hardly filled more than half.

Other than that there are several threads on mumsnet abut chronic fatigue , try posting there and ask about how it started and early symptoms.

Sorry, I hope it gets better soon

[Kizzandra]

Thanks for all you replies. We had blood sugar tested at the beginning but not since. It was clear.

Re asthma suggestions, he isn't wheezy, doesn't cough, hasn't even had cold this winter so we haven't given this any thought. He is pretty fit - in top swimming group at school, does well at PE and Games, is just utterly shattered afterwards. As if he runs out of steam. We also have dogs, cats, horses and he hasn't shown any signs of allergy to them - runny eyes or sneezing.

I will check out the threads on CFS.

Thanks again.

[TheAussieProject]

My son just competed in the NSW State athletic championship and in the Great Sydney Zone for swimming . So being fit and sporty doesn't exclude lung issues. My attitude was asthma, what? Him? IS it a joke?
One evening while we were staying for the night at a friend's house (very cold house) he had complained about breathing. No cold nor cough. He just couldn't breath, but by the time we'd packed and were in the car, he was fine again and we just left it. We still drove away to be closer to hospitals in case.
Two weeks later, we were at the yearly check up, I just mentionned it to the GP. The doctor took the tube and then when my son could blow beyond a point asked us to come in every week to test it. After that he was put on a preventer inhaler and it made the difference.

I just mentionned it to you because it takes 10 seconds to perform and it isn't painful or invasive.

It still leaves you with the narcolepsy and the flu vaccine you talked about in the first post. Last year I did the Coursera MOOCS on vaccines www.coursera.org/course/vaccines . I just went back to read to the archieved course through the flu vaccine section. I don't know in which country you are but if you read some French there is this document from the Health Safety Office ansm.sante.fr/S-informer/Points-d-information-Points-d-information/Vaccins-pandemiques-grippe-A-H1N1-et-narcolepsie-Mise-a-jour-de-l-information-sur-les-dernieres-donnees-scientifiques-Point-d-information , The official staff response on the course was :

^"Checked on this with Dr. Offit and here was his response:
Established by retrospective case control studies​. Estimated to effect 1 in 55,000 of those inoculated with the squalene adjuvanted H1N1/2009 vaccine strain (Pandemrix) in Europe and Scandinavia.

Thought to be molecular mimicry between an epitope on the hemagglutinin and a protein on the surface of hypocretin cells in the pituitary, causing a decrease in hypocretin production (a protein associated with wakefulness)"^

But that was for the 2009 vaccine and the later articles in the press or studies have either been retracted or been proven impossible to replicate. So I wouldn't focus on that.

Leave it on your list, but don't mention it first. From what you tell us he is very tired but doesn't fall asleep mid-sentence or while eating or walking. So it is not narcolepsy.

Another thing you could try if to go gluten-free for 6 weeks. This will prove challenging both in the supermarket (even ham has gluten in it) and at home to use different chopping board / knife for him. THe easiest is to go gluten-free for 6 weeks as a family.

This is again a very controversial aspect. But you have been 4 times at the doctor's, what do you have to lose? See if it could be linked to malabsorption.

[RubySparks]

Being very tired was one of my main symptoms of coeliac disease and it is possible to get false negative results on the blood test so re-checking that might be good or doing a different type of test. As coeliac is in the family and it's an autoimmune disease then it is also possible that it is another autoimmune disease such as type 1 diabetes, thyroid, b12 deficiency and lots of others!

[tkband3]

My first thought on reading your OP was coeliac disease, and then reading that your mum has it makes it even more likely. My three DDs are all coeliac. When my nephew was about 12 he suffered terrible tiredness and lethargy and was tested for all sorts of things, but the GP didn't think of coeliac disease till I suggested to SIL that she should ask to have that added to the list. The results of the blood test were positive for coeliac, although he had to have an endoscopy to confirm the diagnosis.

The blood test for coeliac is notoriously unreliable - I would suggest going back to the doctor and asking to have him retested, emphasising that your mum has coeliac. There is a familial link with coeliac disease, although it's not meant to be hereditary. Might be worth checking the Coeliac UK website to see if any other symptoms match?

Hope you get some answers soon.