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…

I agree that his body knows best, if he wants to rest then he rests. One day he will feel like doing a bit more and a bit more but if he pushes himself too soon he could set himself back.

I have a friend who's son was like this (before covid) and they never really got to the bottom of the cause, maybe ME maybe fibromyaligia but he was like if for 3 years. Didn't go to school, etc. And this was very unlike him, he wasn't a school refuser at all. Went from being a keen footballer and doing well at school to being bedridden. Hopefully your son won't be anywhere near that length of time but even my friend's son is fine now, he just gradually got more and more energy. And I think at many points they thought that would be him for life.

None of them are talking about 'long Covid' - probably because none of us have any way of knowing whether or not what he had at the start was Covid at all.

But they are doing all sorts of tests to rule out other things, and he's going to be reviewed by the GP paediatric review group later this week.

I was surprised by the answer I got from the GP we saw last week though, when she said the thing to do was for him to push himself and do more rather than less... based on how things have been going when he has done more, I don't think this is advice we will be following.

At his age I’d be child led he will know when he feels he can do more. I’ve been supporting my child through burnout and although different to your son, the first few weeks we did very little then slowly slowly they wanted to do more and 6 months later they are such a different child with energy back to levels of average 12yr old but still with good and not so good days. My other very active child who had flu aged 8-9 did nothing for 3wks then again I followed their lead and it took 3-4mths plus to get back to their sporty mad level. Trust your mothering instincts you know your child best not a Dr whose met them for a few minutes

Sorry you and your son are going through this OP 😔

Does anyone know why GP's give this kind of advice (to push through) when a child is exhausted? Genuine question because it seems to go against common sense.

I agree with you. There's a fair bit of evidence around CFS/ME that 'pushing yourself' massively slows recovery.
That said, getting some fresh air and sunshine, even if it is just sitting in a sunny spot of the garden for an hour, and very gentle exercise rather than none - some stretches, a short walk on flat ground etc - these may help but as soon as he feels dizzy or weak or just too tired, he should stop again.

To keep from brain fug, variety will help - radio music and discussion programmes, podcasts, TV documentaries and comedies. These are all passive but stimulating. They don't need a response from him but will help him stay mentally active without exhaustion.

I'm so sorry about this all op, I've been reading for a while. I really think it's about time that you stood up for your son and advocated for him and told the GP that you're not happy with the advice previously given and that you'd like a second opinion, what you actually want is a referral to the hospital to the consultant, even if it's just paediatrics to start off with.

I'd also take him privately to see a paediatric consultant and then at least he'd be able to refer you on to someone. You probably can't wait waiting times NHS.

Newuser75 - I’m talking about 2021 when 11 year olds were not offered vaccination in the U.K. I know this because my dd was 11 in 2021 and only became eligible for vaccination on her 12th birthday. Unfortunately the delta strain of Covid was rife in secondary schools & she caught it BEFORE vaccination. The risk of Long Covid is known to be lower following vaccination. Hence, I am furious that children under 12 were not vaccinated.

ForRoseExpert - I would like an apology from the JCVI.

HappierTimesAhead - because many doctors do not keep up to date with the latest scientific research (lack of time?). Also there has been enormous controversy as to whether ME/CFS has a biological or psychological cause and some GPs still believe it to be of psychological origin and don’t understand the danger of post-exertional malaise. Possibly there is a total lack of teaching about ME/CFS in medical schools?

Pipskeepleaking - please don’t follow your GP’s advice. It’s terribly important to rest in the early stages. We were advised by the Long Covid clinic to only increase activity by a tiny increment and then wait for 3 weeks to see if this had a bad effect or not before increasing a tiny bit more.

Tests? NHS still does the standard tests and did nothing to include long covid. Believe me, I listened and read so much in the last 3-4years (NHS doesn't even have covid test, why on earth would they care about long covid, when covid doesn't matter to them) . Plus they didn't even mention the post viral fatigue, so why would they test for it if the GP didn't think about it. Plus, there are no tests for it, it takes medical expertise and empathy to diagnose, especially a child https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510 & https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351#:~:text=What%20is%20post%2DCOVID%2D19,or%20years%20or%20causes%20disability. NHS refuses to test for covid, it will take decades for NHS to accept to do the tests which will prove how ignorant they were. NHS & UKHSA spent the last 4 years insisting covid doesn't affect children: they will never change their minds because it will be like admitting catastrophic failures (69,000 children ill and the number going up I assume, adults the number is reaching 3,000,000 in 4 years) https://www.newscientist.com/article/2331395-chronic-fatigue-syndrome-may-be-caused-by-mini-blood-clots/ Microclots testing exists in Germany

This happened to my son when he was 10. He was super fit, played football, always active. He went down like a stone, had lots of blood tests etc. He only came downstairs in the morning, lay on the sofa all day, had no appetite and no energy but slept all night. Eventually they said it was probably ME but no definitive test sadly.

He was off school for a whole term but slowly felt better and went back to school.

It was a very scary time but he did get better, went back to football etc but it took some time.

He’s absolutely fine now, all grown up and has two children of his own. I would say let him rest as much as he wants and take it slowly. I really hope he starts to feel better soon 🤞

I’m sorry you’re both going through this @Pipeskeepleaking . My first thought would be glandular fever/mononucleosis (I hope the GP has requested this as part of his recent blood tests).

DH was off school for a whole school year after contracting GF at 11, with one to one tuition to catch up after 6 months. And my DS also caught it (diagnosed after back to back tonsillitis infections) at 15.

I have no personal experience with long covid, but it’s not to be ruled out of course.

Let him rest, do light activities he can manage (even going out to sit in the garden for a change of scene if he can manage it), I hope you get some answers soon & he feels better.

To get my children vaccinated for covid I had to lie, make them lie and go through interrogations. My children hated it and didn't want to repeat it: I managed to vaccinate them fast with the 1st dose. All my vaccines are after lies and interrogations, otherwise I couldn't have gotten them. While they are all brainwashed enough to 'reassure' me that I don't need it. Not even a trace of decency and intelligence to know that when something goes wrong, there is no treatment, no financial help, nothing.

This is what the rest of the world knew 2 years ago, while UK was busy brainwashing 58,000,000 about covid being mild: of course it is mild, if you ignore long covid. s

ForRoseExpert - you did what you needed to do to keep your children safer.

Pipeskeepleaking - it does sound as though your son might have post-viral fatigue. Sorry we are side-tracking into Long Covid (which is probably post-viral fatigue + other deleterious effects) because it has had a devastating impact on the children who have been unfortunate enough to suffer from it. It would be wise to take the ‘cautious tortoise’ (see RCOT advice) approach & go very slowly.

Only thing that has been thrown up so far is slightly low b12. But he’s so so so exhausted. It’s getting worse not better. I don’t know what to do.

Long COVID is often a diagnosis of exclusion. Once everything else is ruled out, some doctors may assume LC, some may not.
However, if it is LC then pushing himself to do more will be VERY harmful. Graded exercise therapy used to be advised but now the guidelines for post viral CFS (which LC is often a form of) explicitly say not to exercise because it is known to make the illness and fatigue worse and cause permanent harm.
I would continue investigating but encourage complete rest as much as possible, including as little light and sound as you can as that uses up energy.

This might sound daft, but have you looked into allergies? They can be triggered by viruses. I knew a child who was so tired all the time that the doctors thought at one point she might have leukemia. But she'd had a virus (pre Covid) which had triggered a milk allergy and this was causing the exhaustion.

Post viral symptoms liek this are not unusual. I dont know why everyone always cites covid as the only virus that can do this, Ive been affected like this over the years and have life long effects from a virus about 10 years ago now nearly

It can last for months or it could be gone in weeks or it could be something not linked to any virus but I just dont know why people are so surprised at post viral symptoms from all sorts of viruses

I'm so sorry OP. You must be so worried. I would not advise following the GP advice. Your ds clearly needs to rest. He isn't choosing to. I would let him for now. Sending as much hope as possible your way x

The GP should exclude obvious causes of fatigue with blood tests (low iron, low B12, endocrine disorders, EBV etc.) & correct any metabolic/nutritional abnormalities such as the low B12 you mentioned. If no other cause is found, then post viral fatigue (whether Long Covid or not) would seem likely & rest is absolutely essential. Over-exertion can lead to a very much worse situation.

Has he been tested for coeliac? That can cause fatigue and low B12.

Considering how more than 69,000 children suffer from long covid, NHS would know the bare minimum about it and advise children to protect against covid, vaccination was supposed to be offered by NHS, the same as any other civilized country with a health care system does for years. But NHS has no covid tests, no covid treatments, no covid prevention, no covid monitoring. What did NHS learn from 69,000 sick children in the last 4 years? 69,000 are those 'lucky' children whose parents know this is long covid, what happens to those not aware of long covid? In a country with 3,000,000 of long covid self diagnosed adults (not GP diagnosed) of long covid cases: what did NHS learn in the last 4 years from millions of victims and mountains of evidence?

Any investigations pending or are they all happy that all the standard NHS tests are good and this to them suggests the child is ok? To a real doctor, this would simply suggest that the wrong tests were done. Plus, a real doctor would admit he/she has no clue and would try to find answers from his/her colleagues, not be happy that 'all tests are ok' and give you an another appointment in a few months - for what? Why didn't they? Can't they admit: 1st that they don't know anything about it & 2nd try to find out from other doctors, considering millions of patients went through their hands in the last 4 years with the same symptoms? Did they all hibernate during the pandemic, learned nothing? Where is the long covid GP that all surgeries are supposed to have? Didn't they ask the 'long covid GP' for advice? Aren't they worried about seeing a sick child left with no treatment, no plan, no investigation?