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 don't know what your agenda is but if you had read my post properly, despite keep quoting it, you would see that my son is an adult. He had previously had two covid vaccines as he is a nurse, however, he has still had covid twice. As everybody now knows you can still get covid despite having the vaccine and go on to develop long covid so vaccinating children would not stop this. We also know that the vaccine has caused significant heart problems in youngsters so the professionals felt that the benefits of children being vaccinated were outweighed by the risks from the vaccine. The op has asked for support with her son's health problems not for a debate about covid vaccinations for children. It sounds like the health professionals are looking carefully at all the options.

You did go through a lot. I am sorry to hear
Just to add some clear, easy to recognise symptoms for POTS: dizzy spells/lightheadedness or even blackouts when standing up.
But in this case, I understand the only symptom is fatigue.

@stayathomegardener interesting! DD may have POTS so it’s not impossible for DS too. But, if this is the case, is it relevant to now? Or just an extra piece of info about him?

btw: GP advice long superseded by hospital paeds who absolutely say take things very slowly.

next question - how on earth to manage mental health in this situation?? So lonely and miserable…

EBV causes glandular fever. And if he has antibodies that means he has had EBV. I’d be very worried if the doctor didn’t know this.

https://www.cdc.gov/epstein-barr/about/index.html

Dr said, and google confirms, that most pple will get infected w EBV at some point and have no symptoms. She said whatever levels they found for DS on whatever test they did (and I wish I could be more specific about all this) showed no evidence of anything other than the sometime-infection.

s

1. there are no biomarkers tests used by NHS to diagnose long covid , meaning how on earth can they rule it out if they can't even diagnose it?
2. min 32: CDC, WHO said there is a ''clinical diagnosis for long covid, meaning just listen to your patient and if you hear them say that they are fatigued'' etc and their life changed after the viral infection, ''this diagnosis has 92% accuracy as the machine learning testing for long covid''.

Fatigue is a symptom that changed a child's life suddenly after a viral infection: on what grounds would NHS be so sure this is not long covid? 4 years of endless infections and reinfections: what did NHS learn from them, that fatigue isn't one of the symptoms? That evidence of covid exists without looking for it?

And if they are not sure what this is, if not sure if this could be long covid, wouldn't the most logical step be to send you to a long covid specialist and let him/her rule out long covid? Isn't this simply common sense, instead of having no plans, waiting for a child to grow out of it? Instead of being told they did everything they could do?

min 35 s about how to score fatigue as a symptom: did they ask him these questions? This is basic medicine.

Some more basic medicine: Infections that may cause fatigue include:

• Flu
• Mononucleosis
• COVID-19
• Cytomegalovirus
• Hepatitis
• HIV
• pneumonia

https://www.webmd.com/balance/how-tired-is-too-tired

1. If it was flu, you would know about it, it can't be mild
2. no monocleosis (EBV)
3. Covid-19 - they did zero tests - RNA virus

4.Cytomegalovirus - DNA virus 5.hepatitis - easy to test - RNA virus 6.HIV - RNA virus 7.pneumonia - I assume symptoms would be obvious

I am so sorry, it's not an easy time at all. I hope you can stay strong. I am sure it will pass, even if it looks hard to believe when you are in the middle of it all. I heard so many stories from people suffering from Pots, many being part of new trials, new treatments, the science about POTS took huge steps in the last 4 years

Can I ask when was your daughter diagnosed with POTS , what causes it and where was she treated for it?There is a mountain of research and clinical trials about it, the researchers sound optimistic about their huge progress, especially because they had so many patients in the last 4 years.

I hope you can stay strong for yourself and for your children.

''daughter may have Pots''= does it mean she was officially diagnosed and treated?

I had suspected viral meningitis when I was a kid (was misdiagnosed as malaria at the time which didn't help)
I was exhausted and apparently off school for a whole term, which I had no recollection of. I was very depressed as well.
The actual illness/fever was only about a week but the after effects were brutal.
So it could still be a post viral thing?

Health professionals? Did you ever wonder why UK is so different from the rest of the world? Did you notice how I always quote American websites and try to stay away from UK websites? Did you compare UK to other countries? Did you follow the discovery of the new covid acute hepatitis and how UK managed to create institutions to do their own 'research', ignored Israel & America - CDC, refused to give CDC blood serology from children, because they were happy to check for current covid infections, knowing that covid only affect the liver after the infection, not during the acute infection? Did you watch the silencing of the New Scientists because they dared to quote Israel's research in order to make it quote the UK new UKHSA which blamed lockdowns, then the adenovirus? Did you wonder why a country like UK which doesn't have enough paediatric beds chose to do its own 'research' when they could have used mountains of research done for them? But not approved by them? Did you wonder why the vaccines were approved by MHRA, rejected by JCVI, control was taken out of their dirty hands in order to allow children to get vaccinated, then given back to them - since then no vaccines, despite being approved? Did you wonder how many covid myocarditis cases are in comparison with covid vaccine myocarditis? Did you check how many long covid cases are in those vaccinated comparing with those not vaccinated? Did you notice how UK didn't bother to update the vaccines to omicron, didn't even inform the public but chose to use the old one instead without informing the public? Did you wonder why suddenly UK hospitals got rid of all covdi reminders and in the last few years covid doesn't appear on the health boards at GP surgeries, Urgent Treatement Centres, Hospitals?Despite 3,000,000 adults suffering from long covid - all self-diagnosed, not diagnosed by a GP! Did you wonder why they stopped ONS and all covid monitoring, despite NHS being on its knees in the same position as at the beginning of the pandemic, despite other countries recovering? Did you wonder why they stopped covid testing while covid is a notifiable disease, meaning those in charge of notifying PHE, can't? If you didn't ask yourself all these questions and many more, then of course you can trust the 'experts'.

I really shouldn't respond to you but I can't help myself! I did wonder at one point whether you were one of those AI bots with all your quotes from American websites and conspiracy theories. I am not going to respond to all your misinformation, just discount a couple. I had covid in march 2020 and was diagnosed by a NHS UK GP in July 2020 as having long covid. I was also on the ONS covid survey and tested monthly for covid which only stopped in 2023.......you really need to stop spouting misinformation, it is not helpful.

There is a genetic link certainly with cfs and I assume POTS as the two are usually linked.

Incredibly hard keeping them positive at the very age their peers seem to be all off out doing exciting things.

My daughter whilst horizontal did a lot of adult colouring books, taught herself photoshop, started learning a language and perfected nail painting.

The transition from competing at a national level in sport to bed bound for a few years was incredibly difficult and she did benefit from some counselling down the line.

@Pipeskeepleaking how is your son doing now, op?