DS11 so exhausted can hardly get out of bed

[Pipeskeepleaking]

DS is a livewire: super fit, walks half an hour each way to school, regional level sport etc etc. Also ADHD: he doesn’t really sit still.

He’s had two ‘nothing’ viruses back to back - neither made him super ill - cold not flu type things. But he hasn’t recovered from the second. I mean REALLY hasn’t recovered. He’s completely exhausted. All day in bed today. No screens, only bits of reading (younger child books). Tears, lethargy. Still eating well.

i think I need to take him back to the GP, but what do I ask for? What might this be? I am frightened…

@Pipeskeepleaking how is your DS?

How is your son doing @Pipeskeepleaking very much hoping for an improvement for you

I had glandular fever as a teen and again as an adult, I was so tired, could barely function. I assume they have checked for that one?

Hope his doing a little better today

https://www.mayoclinic.org/symptoms/fatigue/basics/causes/sym-20050894#:~:text=Most%20of%20the%20time%20fatigue,an%20illness%20that%20needs%20treatment.

DD (15) was like this last year. She had a load of blood tests done and it turned out she had had Glandular fever. ~Luckily it was just before the summer holidays so although she had to cancel a camp to north wales with explorers and some other things she rested for the summer and thankfully has been much better since.

https://www.mayoclinic.org/diseases-conditions/mononucleosis/symptoms-causes/syc-20350328 I can see a few more symptoms for glandular fever. Did they tell you the name of the virus: Epstein-Barr virus. Did they tell you what caused it or if it was a reactivation of the virus? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10292739/#:~:text=COVID%2D19%20patients%20have%20increased,of%20Epstein%2DBarr%20Virus%20reactivation.&text=Detection%20of%20EBV%20DNA%20is,(27.1%25%20vs%2012.5%25).

Do you mind if I ask you what exactly did they tell you caused it?
NIH: ''COVID-19 patients have increased incidence of Epstein-Barr Virus reactivation.''

Did they explain about the virus that can cause it and how it can be reactivated? Did they inform you? Did they tell your daughter to vaccinate against covid, considering how sarscov 2 can reactivate it?

This is what sarscov2 is capable of: ''Studies have additionally reported the incidence of reactivated viruses in COVID-19 patients, mainly the Herpesviridae virus including herpes simplex type 1 and 2 (HSV-1 and HSV-2), varicella zoster virus (VZV), Epstein–Barr virus (EBV), cytomegalovirus (CMV), human herpes virus''- NIH. Meaning prevention is essential. Did they advice your child to avoid SarsCov2?

OP apologies if they've already done this, but do insist on a test for glandular fever as others have suggested.

Has he travelled anywhere recently?

If you say they diagnosed glandular fever after a blood test, the blood test doesn't diagnose the glandular fever, the blood test can diagnose Epstein Barr Virus (EBV) which causes glandular fever. And if they did the blood test, what did they say: was it a primary infection or reactivation? Was it an antibody test? https://www.cdc.gov/epstein-barr/laboratory-testing.html#:~:text=EBV%20antibody%20tests%20are%20not,be%20caused%20by%20EBV%20infection.

The blood tests are not for glandular fever, but for Epstein Barr Virus in the same way the blood test is done for the HIV virus and not for AIDS which is the disease it causes. Did they explain this?
This is why, if I want any medical information, I will look at websites like NIH, Mayo Clinic, CDC - all American websites.

They checked for current EBV and for antibodies. He has antibodies but no current infection. They have tested for everything they can think of and nothing has come back positive.

i haven’t got the proxy access to his records set up yet so I can’t see all the details of everything so apologies if some answers are a bit vague.

No lung or heart or neurology problems.

He is getting up a bit more now, but to stagger between bed and sofa, not to DO anything yet. And I think he is very anxious about it all, which of course makes it way harder and more muddled up.

Thank you so much for getting back to us.
If they tested for everything they could think of, did this include SarsCov2 antibodies? UK government banned these essential tests more than 1 year ago, so how did they manage to include them? It can not be ignored that these symptoms followed 2 viral infections, 2 mild ones.
I understand you don't have access to all the tests they did, but ruling out covid was as important as ruling out EBV, especially if they took into account how more than 69,000 children were affected in 3 years by SarsCov2, not EBV. I just checked: 6,000 people are affected per year by EBV in the uk, so about 24,000 in the last 4 years. In the same last 4 years 3,000,000 adults were affected by long covid & more than 69,000 children - this means 128 times more covid damage than EBV cases, so it makes perfect sense they would be very keen to test for covid antibodies too....
I am sorry they didn't find the cause.

I will ask again, when I next speak to them but looking at their list of possible tests Covid serology does still seem to be there as an available test… But it could be that they just did nasal swab and PCR. I’m not sure. There’s a long Covid specialist paediatrician at the hospital so I would be surprised if they had turned their face against it completely.

If he has EBV antibodies then he is post glandular fever and being exhausted for weeks and months (sometimes years) is sadly very normal. I’m surprised docs are continuing to test him given this finding. It took DD 6 weeks to get back to school and 5 years later her energy levels are still on the low side.

In all this time , with all these tests (including those for rare diseases), did any doctor ever mention to you the words long covid- the most prevalent and disabling health condition in the last 4 years? For which, by the way, there are no standard tests, it starts with medical expertise and humanity.
How many doctors here on Mumsnet contributed to this post reaching 7 pages?

And how much knowledge did NHS invest in post viral health conditions during this pandemic when they declared the pandemic over years ago, while paediatric wards were full in the summer with 'winter viruses'. Because whatever this is, it's obvious that it is post-viral fatigue.

The NHS has a weird denial about post viral fatigue/ CFS/ ME/ long COVID . It's quite unnerving.
Hope he's picking up soon.

I have the same thing (I'm much, much older of course) since a nothing virus two months ago. Doctors have run so many bloods, my b12 is also high, everything else is fine.
Watching with interest.

@Pipeskeepleaking some of the information being thrown at you on here re covid is inaccurate. If he has glandular fever antibodies then that fully explains his condition at the moment and contrary to some of the NHS slating they sound like they are being very thorough! My own son has been ill since November, was diagnosed by white cell differential test in December as it being classic glandular fever (mononucleosis) and that his extreme exhaustion was a result of this and now termed chronic fatigue syndrome (which is usually only diagnosed after 12 weeks of symptoms due to the fact that a person can be fatigued for weeks after any virus). He has been referred to the CFS/Long covid clinic and has had multiple appointments with them since including physio giving him breathing techniques and medication to attempt to dampen down his autonomic nervous system. The main advice is rest, rest, rest. Unfortunately he is still unable to get back to work but is slowly improving. The GP has said it can take 12 months to recover from glandular fever and the person running the clinic said that she had it and took her two years to recover. Sorry but the old adage of time is a great healer is probably true in their situation but I console myself with the fact that there are a lot worse things it could be!💐

I am watching a relative of mine (child) going from doctor to doctor for weeks, with (initial) obvious viral symptoms (now lingering) : not once the option of viral infection was even considered,they treated the child for bacterial infections (repeated antibiotics), without once taking a sample from his sputum, nasal sample etc, just a blood test which showed no bacterial infection and no specific test to diagnose the acute infection. So now, all of it is a mystery. It's so absurd and it's making parents feel completely helpless.

You are very lucky it seems.
inews Apr 2023: ''Parents of children with long Covid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and, in some instances, court cases and the threat of the child’s removal from the home.
Doctors struggle to diagnose the condition due to its complex range of symptoms and often treat it as a psychological rather than physical disease, with parents telling i they have been accused of child abuse and of fabricating the illness as a result.
Experts have compared the situation to the way professionals have previously dismissed ME (myalgic encephalomyelitis), an almost identical disease in terms of the variety of debilitating symptoms and lack of universal diagnosis or treatment. ME is a complex neurological disorder that causes symptoms such as chronic pain and exhaustion and, in very severe cases, can be fatal.''

You were very lucky indeed.
A very different story here: https://pubmed.ncbi.nlm.nih.gov/38493682/

''The dominant pandemic narrative: that Covid-19 is mild, and everyone recovers; that children are not badly affected by Covid-19; and that worst of the pandemic was essentially 'over' as early as 2021/2022. In the face of these characterisations of Covid-19 experience, young people and their families reported significant additional challenges in making the illness experiences of children and adolescents visible, and thus in gaining appropriate support from medical professionals''

The ebv thing is interesting - paed said that the test showed no evidence of any current or recent infection, and that what they found did not suggest he’d had ebv recently at all. Her preferred diagnosis had been glandular fever, and whatever it was she saw on the tests convinced her that EBV is not the cause of his exhaustion.

I do rate our local hospital, and I haven’t heard any suggestion that long COVID has been dismissed out of hand - rather that this (obvious and easy) diagnosis can’t be made on the basis of the test results that have come back.

@ForRoseExpert im so sorry about your relative, that sounds horribly difficult. We have experienced none of this - indeed post viral fatigue is what has been suggested right from the start. It’s shocking to see the impact of something that WAS, in the ‘acute’ phase, so incredibly minor. Not even any fever…

If your son was treated so well, I assume the doctors also recommended a covid vaccine for your child, knowing how covid infection can reactivate the EBV, knowing how UK schools have no ventilation etc. I assume they already told you this.
Considering how covid vaccines are the most basic type of prevention, but somehow considered by the British 'experts' not financially viable. To them, it's better to allow our children to get infected with a novel virus repeatedly for which they are not entitled to any treatments(no antivirals), diagnostic tools(no covid tests, no PCR, no blood serology) or prevention (no vaccines).
But it's good to know that they are entitled to long covid clinics
https://www.bmj.com/company/newsroom/uk-is-international-outlier-in-its-approach-to-covid-in-children-argue-experts/

Had cfs/me 20 years and then long Covid plus an adhd daughter with post glandular fever cfs 10 years ago so do know a bit.

Thoughts, post Covid infection is messing with peoples B12 levels.

Have you tested for POTS?
Take blood pressure lying down, ask him to stand and retake the reading a drop is a clear indicator.

Wondering if your son might mouth breathe or be hyper mobile, there are some interesting links there with ADHD/health and in turn correct methylation of B vitamins.

You may need to then look at the potential for the MTHFR gene.

Rest, rest and more rest, your GP couldn't be more wrong.

s
Min 20 explained how strange symptoms following a mild viral infection should make a real doctor think about long covid. I remember how one of your doctors told you there was no evidence of covid, so it can't be long covid - everything in this sentence is so wrong I wouldn't even know where to start to dismantle it.
In my opinion they dismissed long covid a few times: first when you were told 'it's just exhaustion', 2nd when you were told there is no evidence of covid, 3rd when they tested for DNA viruses, instead of RNA viruses.
Long covid is such a complex condition and in the absence of any other diagnosis, their stubbornness to continue to dismiss it is mind-blowing. The very simple idea that there is no other diagnosis + they did absolutely nothing to test for covid antibodies or covid+ UK children are the only ones in civilized countries not entitled to updated/booster covid vaccines= takes their right away from reassuring you this is not long covid. When no tests were done to include SarsCov2, I truly find it sinister how they managed to simply rule it out. Did they ask for advice from an expert? I assume they didn't, they didn't even have time to tell what they were testing for...
In my opinion a real doctor left with no alternative would accept to try the long covid path, would look for real medical expertise and find out if there is anything they could do to help a sick child.
What did they learn from 69,000 sick children - to stop counting them?