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.

@52andblue

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.

Get a second opinion. And a third if the second gets you nowhere. Go private for an initial consult if need be.

There was a story recently about an Australian woman who has less than a year to live now because, over two years she went back to doctors repeatedly about a mole that was changing and got fobbed off every time. By the time she went elsewhere to get it looked at, it was terminal. Obviously totally different to your daughter's case, but the take-home message is pertinent: if you know there is a problem, keep getting other opinions until you get an answer.

@52andblue

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.

@52andblue You know your DD. The GP doesn't. Trust your instincts. My DD kept being fobbed off last year being told it was just anxiety. She has anxiety and knew herself it was different. It also doesn't help that dysautonomia actually causes anxiety, so many doctors think it's the anxiety leading to illness, when in fact it's the other way around.

My DD uses an app called Bearable to log her symptoms and activity etc. It's very useful to take into the doctors to show them everything your DD is experiencing and it stops them from focusing on one or two symptoms and missing the whole picture.

@BonnesVacances
@Willdoitlater
@Utterlyexhausted
@Puntastic

Well, that was really frustrating.
GP was due to call back. Did so at lunchtime but I was actually collecting Dd from School (phone call to say 'asthma attack, very flushed, lying on floor, shaky, please collect). I explained. He said bring her in at 5pm. All good.

but we've just spent 30mins with a bit of an inquisition. He clearly feels it is anxiety and nothing else. I explained that she can be anxious about school sometimes as ASD and not well supported but that is NOTHING NEW and all her physical symptoms have started since poss Covid about a year ago. He then drilled her about why she felt she was not supported / what school could do better. She didnt look up at any point and kept shrinking in her chair and gettting more and more silent (her diagnosis, on her records says: 'selective mutism'). In the end I just mentioned the recent Ofsted report which lists whole local area as seriously failing on all aspects of SN support.

He did do a physical exam and said he could find nothing and said she'd probably feel better in time. She only spoke up once really to say she felt less dizzy since the iron tablets but she's run out this morning so could she have some more please? He said: 'not needed, your iron is now normal'. At that point I knew we'd get nowhere. He did say he'd chat with the other GP we saw 2months ago and call me next week but I've not got high hopes.

I didn't' argue as
a. she was nearly in tears
b. when I said that I thought her MH was okay (I work in the IAPT system which hardly makes me an expert but I do know my Dd fairly well) and I was just backing up what she said anyway but he was clearly annoyed and I didn't think it would help Dd to get into a difficult conversation in front of her.

Ugh.

I'd seriously consider booking a private GP consult if I were you, OP. They can then refer you to wherever you need to go. Can you afford it?

@Puntastic
When we previously went private for an assessment for ASD we were referred to SS by the GP so I am reluctant to repeat that experience.
(we'd asked GP if ASD could be worth investigating, they said no, we saw an NHS Paed privately and by the time we got home we had a referral to SS for 'possible harm due to unnecessary investigations)

3 years later, her new School then referred to Caamhs for ASD within 1 term and NHS multi disciplinary Dx given within 6 months..

@52andblue So maddening! But par for the course.

Can you do a 10 min standing test at home for PoTS if your DD is saying she's dizzy? You need a BP monitor and pulse-oximeter and take a reading when she's lying down and all stats are stable. Then stand her up leaning back against a wall, standing still and take readings every 2 mins for 10 mins. The HR will go up by >40bpm in that 10 mins if PoTS is indicated.

The symptoms really sound like MCAS to me (which causes PoTS), the wheezing, flushing etc. Is your DD hypermobile?

Giver her Vitamin D and Vitamin B supplements & ask for a referral to CFS clinic.

[quote 52andblue]@Puntastic
When we previously went private for an assessment for ASD we were referred to SS by the GP so I am reluctant to repeat that experience.
(we'd asked GP if ASD could be worth investigating, they said no, we saw an NHS Paed privately and by the time we got home we had a referral to SS for 'possible harm due to unnecessary investigations)

3 years later, her new School then referred to Caamhs for ASD within 1 term and NHS multi disciplinary Dx given within 6 months..[/quote]
That's ridiculous. I'd still do it though.

And get a new GP.

How is she if she does run around?
With ventolin she should feel better - more able to breath after.
But it does make your heart beat faster etc.

Since our possible covid last apr dd1 was complaining of a tight throat after running.
She does seem ok though now. (Asthma in the family).
Maybe video her if she is flushed/shaking/breathing issues. As it might be possible to tell whether it's anxiety or physical.
I know a boy who suddenly seems to have digestive issues. The parents had covid not long beforehand.
I personally would carry on with the iron as anaemia effects your immune system etc.
Is she veggie/vegan?

Tymes Trust or ME Assoc may be able to advise you

Have you had her b12 tested?

Breathless, fatigue can be symptoms and I've heard of covid affecting b12 levels.

GP said she thought: 'post viral fatigue / poss post C19)

You have written this.
Go with this and tell people this.

Let her rest and sleep as much as she wants/needs.
Plenty of fluids. Feed her beef, bacon, elderberry, chilli, make sure she has enough salt[dont overdo that though], any foods that she thinks make her feel stronger[make a food diary].

Frequent orange with bits Tropicana, for her throat.

If she has ASD, then it is linked to POTS/ postural hypotension and these both have onset around puberty.

I got labelled 'anxious' when the real problem was that my blood pressure had dropped through the floor. This can happen when I'm anxious but I don't actually have any control of it, and once it's happened then, well I'm all over the place.

Took til I was 40 to get diagnosed - in 5 minutes by a cardiologist who was an expert.

Also as ASD it took ages to get my asthma 1. diagnosed and 2. sorted. I just used to find it really hard to explain it in words a doctor would understand. And I am a doctor!

It's funny, the GP was really persistent yesterday & she was astonishingly compliant (she has a PDA presentation of ASD) though she had her head down & was monosyllabic she did reply and didnt' leave the room which surprised me. She also let him feel her neck.
Her brother says she is like this at school in front of staff but head down / tears when they are not looking / have left. Clearly she masks a great deal but it makes it very difficult as professionals don't see what I see (tho the ASD / PDA is NHS diagnosed school largely ignore)

Today for example. She put full combat gear on to do a 500 yard walk with me and the dog. Big brother is in Cadets so she is obsessed. Once out, she declares she wants to go on a 7.5 click walk on an unpaved country road to a piece of woodland (fenced off, private). I said No sorry, too far, and you are too vulnerable alone. plus yesterday you were sent home after an asthma attack and we got a short notice GP appointment so you need to work up to it. You can go part way with your big brother if we can persuade him (he's in Cadets, 1st aid trained v sensible) and I can be 'Top Gear style back up car' for if you get tired. We came home, talked him into it, I made a quick pack up for them. We get in car to go to drop off point & she bursts into tears: 'the moment has passed ... I don't understand her...' etc.

Sigh. It's tough being 13. And with ASD. And feeling ill.
I am drinking coffee and eating a cream cake (bad for diet!)

Ooof. Sorry for the vent !

Thanks @AnnaMagnani - that's really interesting.

She went through a really fast puberty at the same time as changing schools (not a happy change) around 2 years ago and after 1 term she hit a wall of ASD burnout I think compounded by body changes and feeling much more tired and achey all over but that seemed to make sense just from puberty and sensory issues around it. That's when she went p/t at school. So things haven't been ideal for her for some time but the physical issues she has now with breathing and the level of exhaustion is only since the 'possibly Covid' last summer.

Is she hypermobile? Doesn't have to be much for a lot of joint achiness (is that even a word?) especially if growing.

@AnnaMagnani
GP asked her to bend thumb and seemed to think extent not signif.
After I asked her why she'd not bent it fully and she said: but he didnt' ask me to' (ASD, v literal).
Before puberty she was like an india rubber. Very sensory seeking. I remember the OT doing a home visit and noting Dd's 175th tumble turn on the trampoline outside the kitchen window :)
Since puberty she is all aches and pains, so I'd say she is less hypermobile seeming now. Her joints click all the time, as she stands, walks, eats etc. She clicks her knuckles as she says they hurt if she doesn't. Her brother is the same. I was similar but not so extreme when younger and had a lot of probs with loose ligaments etc when Pg - really bad SPD that went on for years and am still on crutches so I'd say we are quite a bendy family?

I got diagnosed by a physio after spraining my ankle for the umpteenth time but prior to that, no way would I have said I was bendy!

I do have a couple of hypermobile things I can do but they are v dull and uninteresting. Also I have v tight tendons so it isn't obvious - if I try to touch my toes I only reach my knees

So personally I wouldn't go on a GP bending a thumb - sorry GPs. I have tight tendons, loose ligaments and the ability to sprain my ankle by looking at it the wrong way.

Hmm.
Call from surgery today: 'can you book further blood test for Dd'.
I asked which ones but reception 'didn't know'.
Managed to get in at sister surgery same day.
Asked very nice nurse what bloods were for and she said:
B12, calcium and 'inflammatory markers'.
That's something I guess?

.

Good that they're checking her vit b12.

Have they done vit d test?

Also have they rules out coeliac? They need to be looking at why her iron levels are low rather than just bunging tablets at her. Is it heavy periods or is it malabsorption (coeliac) or something else?

very flushed, lying on floor, shaky,

DD has coeliac and can be like that if she's been glutened. But she also has POTS and can be like that with a POTS attack (she also has fibro and EDS).