Trying to find an answer to daughters fatigue

[Alexandra84]

DD is nearly 8.
About a year ago, we realised she was becoming tired more easily. This has been slow over the course of a few weeks…we put it down to Xmas, too many extra curricular activities.
GP suggested maybe a delayed response to glandular fever. We stopped things like swimming, implemented earlier bedtimes etc. She appeared to seem better during summer, we were still being cautious with not doing too much.
Started Year 3 in September, but a large issue this year has been friendships, and at some points she was quite upset and distressed about this. This was clearly impacting on her fatigue, but more from a mental health perspective.
Asked for another blood test before this Xmas, nothing of concern.
I frequently worry about her being AHDH/ ASD-attention is shocking, fidgety, has picked at her fingernails, but this weekend, she has been visibly tired again. Asked for a nap when she came home from school on Friday…this is not just sensory tiredness ( I work in a special school for context). Agreed to go to bed again over Saturday lunchtime.
GP appt again this week…what to pursue next? She looks ill. Dark shadows under her eyes, pale and skin looks shiny.
Any advice really appreciated. I’m so upset now thinking she’s so little worried we’re just going to be brushed aside by medical staff.

Sorry you’re both going through this… just to check all the blood tests were fine?
picking at fingernails-could this be an anxious thing? Any friendship changes or worries about school? Anything else on her mind that worrying her?coud try a worry monster to see if that brings anything out?

How about asking for a referral to something like this? https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp
maybe they could know more than gp?

Coeliac?

Were her bloods actually fine, though? GPs are frequently 'fine' with thyroid levels out of range- even a slight deviation could be causing all these symptoms. Look at her online records via the NHS app and see if her results are in line.

Push for more testing, advocate for her

See if you can find her blood test results on the NHS app and post them here. Then you can get some more specific help on which direction to go next

Has she been tested for coeliac?

Follow your gut feeling if she's not herself.

Long Covid Kids charity has an excellent website and Facebook support group - please consider posting on there as that could be what is going on.

Sleep Apnoea
Narcolepsy

My son had Sleep Apnoea, it's much more common in children than people realise, and usually easily resolved by taking tonsils & adenoids out.
I have Narcolepsy, less common and more usual to develop slightly older, but often triggered by flu/glandular fever type illnesses so a possibility.

Neither would show up on blood tests, both could cause what you've described through lack of restorative sleep

Masking adhd is exhausting. Can you get her assessed?

You feel she's Neurodivergent and mum's instincts are pretty good so you're likely right.

If she's ND, this is significantly genetically associated with hyper mobility or Ehlers Danlos ( type 3, hyper mobile). This can cause a few issues, fatigue, some nutritional problems.

Full blood count is a good idea looking at inflammation markers, infection markers and full nutrition screen. Iron, magnesium, Vitamin D are big ones to check.

EDIT - you had bloods done. I'd want the results to analyse myself personally. Their version of ok isn't always optimal with iron and others like this.

Could she be low in certain vitamins like iron?

Thank you for all your replies.
I have tracked the results down and attached what I can (all personal details are hidden).
what is concerning me is the eosinophil level, which has gone up by 1.5% in 12 months.
Some of the Google searches relating to this have got me quite upset. However, trying not to overreact, she does get up and go to school everyday, successful play dates when not too tired…surely we would have been aware of anything really awful?
Any advice really appreciated. GP appt next week.

Just so you know..your daughters name can be seen on one photo

So none of that stands out except for the eosinophils.. has she ever had any seasonal allergies? Has she visited any foreign countries in the last year or so? Does she have any foods or textures that she doesnt like to eat, does she have stomach aches, does she snore?

I am thinking that you should consider
enlarged tonsils/adenoids which might be driving sleep apnea..which would make her exhausted a lot of the time and could cause the raised eosinophils.
an infection that she might have acquired abroad and has cleared the acute phase but that has had some chronic impact
heart problems..has she had an ECG
her TSH might be off where it should be for her..although it is within normal range for the general population

I think you should ask for xray of tonsils/adenoids to judge their size/impingement on her airway and if that is clear, an echocardiogram to rule out heart problems and to be referred to a pediatrician to get to the bottom of all of this

Hello, thanks for replying.
we’ve been abroad, just within Europe (Spain/Italy), I don’t recall anything specific to those dates abroad. It was around Christmas 2023 when we noticed the fatigue and late Jan when she was so exhausted, I ended up going to A&E as she looked so unwell and grey.

Regarding the sleep, once she’s asleep, she is fast asleep…it takes a lot to wake her (but she’s been like that since a baby). Is that in keeping with the apnea? No snoring.
I also can’t think of anything re food…she’s known for being really good with lots of healthy foods, always willing to give things a go.

Im so upset that it’s gone on for so long, our whole lives revolve around trying to help and manage her.
Should I be worried?
im going to call and ask for GP appt today.

No suggestions but here in solidarity. I'm in a similar sort of situation with my 7yo DD (fatigue, feeling of weakness on and off, likely ASD/ADhD). She's had all the blood tests which have been reported as 'normal'. I haven't managed to see the results myself yet as they haven't been attached to DD's record.

Something that has made a huge difference to her has been reducing her school timetable to mornings only. This has given her a chance to recharge and she's in a much better place. We're now at the point of trying to increase her timetable.

She is still sleeping 12 hours a night and still struggles to wake up most mornings though.

So I think going backto the GP is a must..nothing is going to change unless you push for a diagnosis and treatment at this point..what I mean is that waiting for her to get over it has not worked (which it does with many things to be honest). I would focus on tonsils/adenoids with sleep apnea and cardiac to start with as those seem the most likely to me, but given the waiting times with the NHS you best start asap. If you can afford private, then look for a private ENT pediatrics and pediatric cardiologist and just self refer..take print outs of her blood test and a written timeline of symptoms so they can see how long its been going on for.

Thanks. We have an appt for Wed, though will as check for any slot at beginning of week too, nothing was available today.
Yes, I feel awful that we just thought lots of early bed times would fix this. Very frustrated that despite two blood tests with eosinophils raised, we’ve been told there’s no issues.
It makes me feel ill to think we’ve not known this needed addressing.
We can go privately if necessary, will also look into that. Thank you for your time, it’s really appreciated.

Ferritin 29 is quite low - not clinically anaemic but borderline. I would try some gentle iron supplements as this may help. Take with vit C for better absorption.

Annoying they didn’t test B12 or vit D. Vit D supplements are a must for everyone in winter anyway so I’d add those too. See if you can get B12 tested too. Does she eat much meat/dairy?

Posters have mentioned coeliac, this can be linked to low iron, so worth looking up the symptoms and seeing if others match too. It can be a hard one to diagnose, there is a blood test but it’s not completely reliable.

If she doesn’t snore I’d say apnoea is unlikely although not impossible. Does she mouth breathe?

Does she have any issues with getting to sleep or night wakings, very early waking?

Has there been a test done for glandular fever or was that just an idea from the GP?

Re the ADHD - tiredness can of course cause or exacerbate attention/forgetfulness issues - so it will be really hard to work out whether there is any ND whilst she is also so physically exhausted. If you can manage to improve the tiredness you may find attention improves a lot.

If it's post viral I would think it's almost definitely ME/CFS which doesn't show on blood tests and the only treatment is pacing and plenty of rest.

I can't see that they have done a tissue transglutaminase IgA test (TGt-IgA) for Coeliac which frankly along with the B12 one would be where anyone with knowledge of coeliac disease would start with.

Its thought that 1 in every 100 people have coeliac disease (possibly more as many don't have symptoms) so why it's not more routinely tested for if people come in presenting with fatigue I don't know.

Came here to say this. There are some liquid iron versions (I think one is even blueberry flavour?!) as well as Spatone, which wouldn't give your daughter gastrointestinal symptoms but would just push her iron stores up. Iron's really important during puberty. Low serum ferritin, even with normal red blood cell levels, causes tiredness in adult women, especially young women.

Her name is visible in last photo OP x

There is a ‘Bioplex’ IGA ANTI-TTG Antibody test, results is ‘<0.5 U/mL’.

Is this Coeliac? Wanting to be sure I’ve not misread conversions between internet info and how it is summarised here?

As another poster has said 29 ferritin is low. And can be linked to coeliac but the blood test there does not indicate that from the test.
my ferritin is 33 and feel awfully tired with it but NHS would say in normal range and but iron tablets if desire to.

i would ask to be referred to a paediatrician.