DD, 13, 'post viral fatigue' bloods test ADVICE please?

[52andblue]

Dd and I both had a long weekend of feeling very unwell last spring.
Difficult to breathe, very fatigued, high temperature.
No cough and no tests available then so don't know if C19 or not.

Come Feb this year she's still pale, tired, short of breath (I'm ok now)
GP reluctantly agrees to see her. Does bloods which show 'iron of 16 and low white blood cell count' (no further info given despite my asking persistently - my local GP is effectively 'closed' still). After I pushed she was given ferrous fumerate tabs 2x daily plus an inhaler. This didn't work so she's been given a 'background' steroid inhaler 2x day and the other 'as and when' one which she can't use as it gives her a headache. GP said she thought: 'post viral fatigue / poss post C19)

If anything she is worse. No energy, very pale except on short gentle stroll when she becomes very red cheeked / sweaty. Not much appetite. Tight chest and throat - asking for a general painkiller as 'so sore'. She is pretty phlegmatic usually and doesn't make a fuss.
Off her grub and off school quite a bit too.
Bloods repeated this week show iron is 'now normal' (it's now 23).

Her other bloods are:
haematomin: 140 / 28.4 (two figs given?)
white blood count 5.3
platelets: 265
red cell count: 4.93
neutrofil: 3.16
lymphocytes: 1.59
basofil: 0.04
neucleated red count 10 9/l

Apologies if all spelled incorrectly but these were rattled off quite quickly by the receptionist who was too busy to repeat slowly for me.

Can anyone advise what I can do to help her if GP says: 'all fine' as she clearly isn't. She is a shadow of who she was a year ago.

IF it is PVF then rest rest and more rest. Far more rest than she thinks she needs. No gentle walks, no encouragement to try doing a bit more, just stay within her boundaries. Use pacing (do a bit, rest before tired, do a bit more. On good days never do more than you can do on a bad day). But she has got an abnormal blood test result (low white cells) so that needs explaining first before you accept PVF as final diagnosis. (Not a medic, pvf sufferer).

I think the nhs fatigue clinics probably all have a list of blood tests GP needs to have done before they see people. (Might be different for children). Would give you an idea if GP has done all they can.

Correction

...to check if GP has done all they can.

Google reckons with a low white blood count she needs to eat well, rest lots and be careful to avoid injury and illness.

thank you everyone.

IS her white blood count still low though? GP says not?

sorry that Qu was for @Puntastic and @Willdoitlater

Her WBC is at the low end of normal
But still within the normal range. As she isn't well they need to look at more parameters to rule out other potential causes.

As someone who had PVF - rest rest and a ridiculous amount of rest - it took me around 9 months to feel normal again - and I still get tired

The white cells are all normal. The nucleated red cells just shows the units of measurement not the result. The significance of the ‘iron’ result depends on whether you mean serum iron (which isn’t measured so often) or ferritin. Her symptoms do all sound like post viral fatigue/ long covid don’t they?

Sorry, I thought you were telling us it was low. Maybe its time to ask for a referral to a fatigue clinic or rheumatology (since she is also in pain). At very least, you need support from doctor and school to put in place adjustments so that she can get enough rest. Which might mean somewhere to lie down to rest at break times, no PE, reduced timetable, home tutoring, etc depending on her fatigue levels.

@Willdoitlater

I spoke to the GP yesterday.
They just said, bloods are now normal.
Does she just 'not like School'.
I explained that she is ASD so sleep and stress have always been issues but that prior to the 'it might have been Covid' last spring she was fine.

Now she has enormous fatigue, breathing issues, brain fog, joint pain.

He asked me 'what I thought it was' 3 times in the 9 minutes we spoke which was a bit frustrating. He is going to speak to the GP who met her and did the 1st bloods and call me back.

I feel I should know what to ask but how can I if I don't know what it is?

Look at new draft NICE guideline on ME/CFS and ask GP to follow it. Link to guideline follow if needed when I've put lunch on... Referral to specialist ME/CFS clinic would be useful so you have formal backup to ask school for any needed adjustments.

www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

I suspect GP asked you what you thought because he thinks its either anxiety/depression or ME/CFS. Both carry stigma and the suggestion 'doctor is not listening to me' so he wants you to say it first. Or he 'doesnt believe in ME' so wants you to 'admit' she is just anxious! Or maybe he is baffled and thinks a mother's suspicions might be useful information.

Sorry I'm drip feeding my replies while cooking.

The draft guideline is second thing down on lhs of the page linked above.

See also Tymes Trust, ME Association, Action for ME, Long Covid Alliance or Long Covid Kids support groups online. I'm thinking you really need to look at her symptoms and see where she best fits... long covid, uncomplicated post-viral fatigue or full-on ME/CFS, or does she have some symptoms that maybe point elsewhere.

Thank you very much - all very helpful

Yes, the GP did seem to be fishing re anxiety.
I told him I work in the IAPT system and know about GAD and Depression symptoms and that it didn't seem to be either of those and that her breathing issues didn't fit anyway. So maybe he thinks anxiety and asthma? It will be interesting to see his approach on Friday. I'll do some research as above in the meantime, thank you. x

I got PVFS from Glandular fever when I was 19. I spent 5 months in bed and it was 18 months before I could start to pick my life up.

In that time I was diagnosed with ME/CFS.

I would keep pushing the GP for assistance, it took me a long wait to get the CFS diagnosis.

PVFS can present in so many different ways, mine affected my breathing, my period, my weight, I got headaches and actually the lethargy was the least worse symptom.

I just saw this in the Benefits and Work newsletter:

The DWP has issued guidance to DLA decision makers on how to deal with awards for Long-COVID in children,...

Decision makers are told that children who remain unwell at 12 weeks after the onset of COVID-19 with a wide variety of symptoms, and whose long term prognosis is unknown, meet the diagnostic criteria for post-COVID syndrome.

They are also told:

“A child does not have to have had a positive test result to be diagnosed with the syndrome. Testing has not always been easily available.”

The guidance includes a list of symptoms taken from NICE guidance published on 18 December 2020. Quote end.

So two take-aways...

Its a reminder that any sick or disabled child might be eligible for DLA whether they have a diagnosis or not.

And its a reminder that there is a draft NICE guideline for long-covid (which may have important differences to the one for ME/CFS.)

Sorry to bombard you with more info.

That's really interesting @Willdoitlater

I guess long covid IS a thing then if the DWP are including it in benefits provision? I must say I'm surprised, knowing how reluctant this particular Govt is re benefits for people with illnesses / disabilities.

Dd gets DLA anyway due to her ASD so I hope the GP doesn't' think we are pursuing things from that angle.

I would ask gp for an ecg.
I had very similar symptoms to your daughter, I also had a positive covid test in September. GP has been really good and I had ecg, chest X-ray and bloods. Bloods normal but ecg shown an abnormality, then referred for mri which showed myocarditis.
I echo what others have said about resting

Ask for a copy of the blood test results (from GP) every time, they can email or text them to you.

A few things stood out from your posts. The flushing, breathing difficulties, fatigue and joint pain point to a condition called Mast Cell Activation Syndrome (MCAS). This is also linked to PoTS/ dysautonomia which many people are now suffering from following Covid and also accounts for the brain fog and anxiety.

MCAS is very difficult to diagnose and even harder to find an expert, but you could in the meantime try OTC antihistamines to see if they alleviate any symptoms as that's one of diagnostic criteria. Dysautonomia is easier to diagnose but hard to find consultants who understand it. But there are things you can do to improve symptoms which might help in the short term.

It's worth googling both to see if anything resonates.

@52andblue Just tagging you OP so you see my reply. The more I re-read your posts I'm sure that's what could be the problem. Especially with the ASD, stress and sleep issues.

thanks @BonnesVacances

The GP did seem to think that it 'must' be anxiety ASD based.
But I explained that she is a different child to pre infection last year.

Her iron is still really low..I don't consider anything under 40 as normal..and I only feel ok when mine is between 70-90. Keep up her iron if you can as well as the other advice.