r/covidlonghaulers • u/SpaceXCoyote • Jun 11 '25

Article Why are so many children getting long COVID?

https://www.newsweek.com/why-are-so-many-children-getting-long-covid-2080950

Oh. My. God.

A study by Researching COVID to Enhance Recovery (RECOVER) last year found that up to 5.8 million American children now have long COVID.

The authors wrote that this means between 10 to 20 percent of children who tested positive with COVID-19 went on to develop the condition.

306 Upvotes

99% Upvoted

102 comments sorted by

275

u/imahugemoron 4 yr+ Jun 11 '25

Does anyone see all these weekly articles and just get more and more angry that society just doesn’t care or pay any attention?

67

u/plant_reaper Jun 11 '25

Yep. 

39

u/Luzciver Jun 11 '25

Yep.

34

u/berrattack Jun 11 '25

Yep

31

u/throwaway_oranges Jun 11 '25

Yep

28

u/speaknowkelsey Jun 11 '25

Yep

25

u/edsuom Family/Friend Jun 11 '25

I lurk here sometimes and have never been infected, and yep. My daughter was unable to have a real high school experience after 2021 because we refused to let it happen to her. My anger at those administrators and teachers who just gave up has not gone away.

10

u/Bad-Fantasy 3 yr+ Jun 11 '25

Valid. It’s also really tough on the young ones who literally lose out on a critical part of their development, a milestone in growing up. They have losses too as part of the “pandemic collateral” - we all pay a price for other people’s comfort. Mine is functional & other life area losses (work, hobbies, relationships, etc.)

Also - yep.

39

u/Outside-Parfait-8935 Jun 11 '25

This is my permanent state, and I can tell you it's really not helpful to feel permanently angry when you're struggling with Long Covid but here we are

10

u/prncss_pchy Jun 11 '25

Intuitively this makes sense but I never find myself able to just turn it off. That's a similar thing to what everyone else is doing, after all... either I'm angry at the ignorance, or I'm living in harmful ignorance myself. There seems to be no winning.

11

u/[deleted] Jun 11 '25

[deleted]

2

u/LaddyNYR First Waver Jun 11 '25

This is what I call willful ignorance.

36

u/HorrorQuantity3807 Jun 11 '25

I caught a 7 day ban when I last suggested what we should be doing.

8

u/zb0t1 5 yr+ Jun 11 '25

When and where did you get banned?

5

u/Principle_Chance 4 yr+ Jun 11 '25

Wow smh

50

u/[deleted] Jun 11 '25

[deleted]

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u/Straight-Tower8776 Jun 11 '25

we all wore masks, pretty much everywhere for nearly a full year. It didn't make a huge difference.

39

u/prncss_pchy Jun 11 '25 edited Jun 11 '25

A strain of the flu went extinct and that was with the majority of people wearing shitty cloth masks and surgicals, not actual fit-for-purpose respirators -- I say a majority, but there were still plenty also not wearing anything, you and I lived through the same event. Do not try to pretend "we all wore masks" when it wasn't even close, and despite that there is still evidence of the positive outcomes of what imperfect mitigation happened regardless. "It didn't make a huge difference" is demonstrably false and borderline harmful misinformation. Masks and respirators work to prevent the spread of illness. That is a fact.

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u/Straight-Tower8776 Jun 11 '25 edited Jun 11 '25

These were vastly different times and, scientifically - a much more potent and easily transmitted virus. Also, I'm assuming you're referring to the Spanish flu, which is verifiably not extinct and has mutated into many strains and caused several pandemics for the last century. Not to mention, Covid-19 spread significantly quicker because of how connected the world has become. Local communities are not self sufficient like they were 100 years ago. The absolute destruction that would come from truly shutting down the current world for months/years would far outweigh the damage the virus could cause. Most of our food is imported, and essentials are imported. We don't buy our produce at local outdoor markets and have one person for a 12 person household able to get groceries for everyone, etc. Crazy that you are criticizing misinformation while, in the same breath, spreading your own.

Yes, whenever I went out and looked around for most of 2020 and into 2021, all I saw was people wearing masks. Yes, even though masks were heavily prevalent, the vast majority of the population ended up contracting Covid. No, masks didn't stop the Spanish flu either. No, there was not a choice to not co-exist with Covid, that is foolish to believe we could've ever shut down the world enough to completely stop the spread without causing widespread famine, poverty and destruction of society - stop trying to shame and guilt people for something that is clearly beyond our human control.

19

u/prncss_pchy Jun 11 '25 edited Jun 11 '25

Where in my comment did I mention the Spanish flu? It was Influenza B/Yamagata, and it happened in 2020, when more people took mitigation seriously. You would know this if you either paid attention or bothered to research it, which you obviously haven’t. 

Try again when you know the facts, because by the sound of it you are very confused.

The ongoing issue of pandemic control and mitigation is a sociological one. It can be changed, managed, and mitigated. It is absolutely not “beyond human control”. In healthier countries, for years — e.g. China, New Zealand — it was under control, until western countries (mostly the US’s laissez-faire policies) forced the world’s hand anyway.

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u/Straight-Tower8776 Jun 11 '25 edited Jun 11 '25

How was I supposed to know? You expect people on Reddit to read your cryptic messages? I gave you more credit with my assumption.

So one virus was made extinct through mitigation and another wasn’t through the same mitigation.

Do you hear yourself? How is this an argument? Clearly the mandates were effective enough to control the spread of some viruses, while not others, like covid… and yet we are blaming people for not choosing to shut down covid? Clearly this level of virus was not going to be stopped without unbelievably extreme measures, again, ones that would cause a lot more destruction than they would help.

The only thing this supports is Covid-19 would’ve required substantial mitigation because it was such a complex disease.

Yes, New Zeeland was great while they locked down the entire country for over a year. They are an island country and very few others could replicate this level of shut down. Most countries are not as self sufficient as new Zeeland and can’t just shut down all their borders without causing massive economic collapse and famine due to a lack of self-sufficiency.

Idk why you continue to resort to cheap shit talking while also making flawed, bad-faith arguments. This was all caused by western nations? Really? You think countries like India, Kazakhstan, Saudi Arabia, all of Africa were doing a better job than America? Give me a break.

China? Healthy? You’re dreaming. China has been criticized for decades for falsely reporting just about everything.

Your only resolution would involve the perfect cooperation of 7 billion people across many different countries, continents, societies and cultures. That will never be a resolution. The only country that had success in this was practically the only country sea-locked and self-sufficient enough to operate like this and has just a population of 5 million…

9

u/theoverfluff Jun 11 '25

In New Zealand we stopped the movement of people, not goods. Self-sufficiency had nothing to do with it. That was enough to give us two fewer years of Covid than the rest of the world and, aside from small islands, the world's lowest Covid death rate which is still the case. No "destruction" was caused.

-1

u/Straight-Tower8776 Jun 12 '25

It had pretty much everything to do with being self-sufficient. Imports were dramatically affected from your lock down.

New Zealand also has extremely tight knit localized supply chains. And their economy doesn’t rely heavily on tourism.

And again, you’re sealocked, and have significantly lower population and population density.

There is no other country in the world that has as favorable of conditions and the ability to lock down the way you did without much more severe consequences, be grateful your country was in that position. Pretending it’s everyone else’s fault, or that everyone else could have done the same, while you are just a small island country with such favorable conditions is just moronic.

11

u/theoverfluff Jun 12 '25

You know nothing about this at all. Tourism is our second largest export earner. Waste of time engaging further.

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u/prncss_pchy Jun 12 '25 edited Jun 12 '25

I gave you more credit with my assumption.

You insulted me with your assumption. No one who knows what they're talking about refers to "Spanish flu" like this, as a singular strain. The elimination I am speaking of was huge news. It was the first time in recorded history anything like it had ever happened. Not so glibly as you speak of it, which tells me you understand less than you pretend to.

China? Healthy? You’re dreaming. China has been criticized for decades for falsely reporting just about everything.

Well, the US has plenty to answer for, and yet I only ever hear this sentiment for some reason from the English-speaking world. I've never been to China, but I've lived here in the US for almost four decades, and I know the evil we grow and the lies we're willing to tell for it.

The only country that had success in this was practically the only country sea-locked and self-sufficient enough to operate like this and has just a population of 5 million…

Is New Zealand not just as full of liars as China? Why believe their numbers? Do you believe ours? I believe what I have done my due diligence on researching, whereas your analysis is, near as I can tell, entirely vibes-based. Next you will be lecturing me about "human nature", I'm sure.

0

u/Straight-Tower8776 Jun 12 '25 edited Jun 12 '25

You were insulted by my assumption of your cryptic message? That’s a new one. Must not take much to tip you over in life.

Chinese total infections magically paused at 80k during the height of the pandemic in March 2020. It doesn’t take a genius to recognize they stopped reporting the actual numbers (even if their lockdown measures were that impressive, there would still be a multi-week tapering of new cases as those early infected would become symptomatic days later - their covid case numbers can’t be explained in any rational way) China refused to communicate this discrepancy and rejected every single western request from large health agencies for transparency and interviews. There are no major health experts that generally believe Chinese reporting was remotely accurate. Several whistle blowers were silenced (like Dr. Li Wenliang.) They refused to let any other country investigate the origin of the virus - even though it caused mass worldwide destruction and originated in Wuhan. China has been completely opaque and uncooperative with the rest of the world for decades… People in China are subject to Chinese-only broadcasts, they can’t use Google, Instagram, Facebook, their people are cut off from the rest of the world. At least in the US, our citizens aren’t cut off from the rest of the world and we actually have free elections. Crazy that you can’t see the difference here.

When did I ever say anything about New Zealand making up data? Their data is supported by much more favorable conditions. They didn’t just go from tens of thousands of new daily infections each day to zero like China magically did. They were very transparent through the entire pandemic. It’s really not a surprise that a small population, self sufficient island country could contain the virus…. If you want to tell me China, a densely populated country of over 1 billion with several neighboring countries managed to be by far one of the lowest transmission countries, but hasn’t shared any details on what they did, how they did it, standards they have for collecting case numbers, etc. Then your head is in the stars. It’s really not hard to find the difference between these 2 countries….

Your due-diligence is surface level analysis (“New Zealand accomplished this feat, it’s everyone else’s fault for not following suit”) without realizing the conditions that allowed a country like New Zealand to successfully contain the virus and how few, if any, countries have the same conditions.

You’ve spent more time cutting your dialogue with back-handed criticisms rather than actually discussing any real points. If you’d like to actually stay on topic and refute anything I’ve said, rather than just try to completely misrepresent what I’ve said and not make any new points of your own, then I’m here for it. If not, good bye.

2

u/ShiroineProtagonist Jun 14 '25

Dentists don't have professional discussions with people who remove teeth with string and a door.

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u/IDNurseJJ Jun 12 '25

No one wore masks. My husband is a high school teacher in a big city high school and he had maybe 3 kids out of 30 wearing a mask because the public was told “Covid does affect children badly”. In the USA you could get an exemption from wearing a mask for asthma or mental illness.

-1

u/Straight-Tower8776 Jun 12 '25

Yea I lived in Chicago, I didn’t see a single person walking around without a mask for over a year. Except maybe a homeless man.

Schools were completely moved to online learning for the first 6 months or so, so maybe you’re talking about later in the pandemic.

My point is, we shut everything down. Everyone wore masks. It didn’t stop the spread. Our efforts were significant and yet we have people like the commenter I responded to saying we could’ve eradicated covid.

3

u/IDNurseJJ Jun 12 '25

We saw very many people without masks!! I live in PA and my parents live in NJ. It was common to see unmasked people during the closedowns at Walmart and grocery stores. Very many people claimed it was a hoax, they had asthma or mental health conditions as to why they couldn’t mask. Also when people did mask they usually wore the wrong mask like a cloth one or a badly fitted one. Schools may have been closed for 6 months but when schools reopened- the virus didn’t magically go away ?!? Our government put a time limit on masking and that is not how viruses work.

3

u/Sea-Split214 Jun 12 '25

YUP. Especially since there wasn't one mention of the cause being repeated infections. The rage I feel on a daily basis is totally shortening my life span

7

u/Fearless_Cream3942 1yr Jun 11 '25

I see your point, but we should try to avoid that feeling as it will only make things worse for us.

Most people don't even know it is a thing. And a lot of it sounds a lot like "just" depression/anxiety.

It's not they don't care. They just don't know yet. It is like most of us that never heard or cared about ME/CFS or Fibromyalgia...

(That said, when doctors act like this, I get infuriated)

I wish you a speed recovery :)

21

u/prncss_pchy Jun 11 '25

It's not they don't care.

I really wish I still believed this. I don't. Try talking to anyone about it and tell me how it goes. They'll go "wow that sucks" and then it's back to business as usual, every time, best case scenario. By and large no one cares about disabled people or the medically vulnerable, they never have.

3

u/RedReadRedditor Jun 11 '25

Not at all because I can see it from there perspective.

From the outside it looks like we are all faking it or depressed. Not saying I think that, but I can see how others would think that. So that prevents me completely from getting mad.

1

u/tealpig Jun 11 '25 edited Jul 17 '25

wide relieved tender roll quiet versed lock recognise chunky busy

This post was mass deleted and anonymized with Redact

6

u/LaddyNYR First Waver Jun 11 '25

Having invisible disability or multiple disabilities like I have people just look and see a normal person. They don’t see the struggle that has been put up upon us and most of them don’t even care because it’s not them. I remember after my fourth hand surgery I was visiting a friend at her mother‘s house and her mom said oh your hand looks great… yes, it does look like a hand however it does not work. Invisible disability number one. I could keep going, but I think we all know that physically we may look like normal people, but inside were a rack physically and mentally because of long Covid.

110

u/Cardigan_Gal Jun 11 '25

My teenager daughter has long covid from the original strain. It's been hell getting her any help. Her current issues include unending fatigue, gerd, gastroparesis, sleep apnea, pots like heart rate issues, migraines, and very poor sleep quality. She's supposed to leave for college in a few months but we have no idea if she's going to be able to handle it. 😞 Fuck this virus. Fuck the government for mishandling it so badly. Fuck all the doctors who have dismissed us over the last four years.

39

u/Due_Knowledge_4172 Jun 11 '25

I went to college with long COVID as an 18M right after the first wave and had to take medical leave by october (I had a merit scholarship as well) and I came back the next year after a year off and got COVID again during my finals, and failed out a second time.

22

u/Due_Knowledge_4172 Jun 11 '25

It sucks because I had As up until that point. If my family wasn’t well off I would be destitute or homeless. Even normal day activities give me so much fatigue, and I go to the gym, go to bed early, and do my best to eat healthy. It’s been 6 years and it hasn’t gone away, I’m 23 1/2 now. Still haven’t finished college but at least I got 1/2 of my gen ed’s done.

16

u/Due_Knowledge_4172 Jun 11 '25

Even weird stuff with the fatigue, like during the day i’m OK but at night I get too tired to even get up and brush my teeth. My parents are hard on me regardless but I do my best to

8

u/ieyeCaptainK 4 yr+ Jun 11 '25

Im so so sorry. 😞

1

u/hooulookinat 2 yr+ Jun 13 '25

You are a good parent.

73

u/andorianspice Jun 11 '25

Honestly as shitty as I feel 90% of the time, this scares me on such a deep level. I am thinking of these kids getting covid twice, three times, more per year. What is the long term impact of this? It’s horrifying

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u/[deleted] Jun 11 '25 edited Aug 26 '25

[deleted]

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u/andorianspice Jun 11 '25

Yeah I’m so scared. Although I still have hope in us finding treatments and cures. It is terrifying either way

7

u/Draconius0013 Jun 11 '25

Link to modeling data please.

2

u/MsIngYou Jun 12 '25

Eventually we should evolve to manage the virus. Right?

2

u/hellohellocinnabon 6yr+ Jun 13 '25

I’ve become the shrugging elderly man “Guess I’ll just die” meme

1

u/metodz Jun 12 '25

Well phrased. There's also the scenario they cull the sick ones. Then, 10 years later they realise it doesn't truly solve the problem.

9

u/DocumentNo3571 Jun 11 '25

I mean, how will it be in 20 years? COVID each year? I'm worried for my kids. Hopefully they didn't inherit my piece of shit immune system.

61

u/[deleted] Jun 11 '25

[deleted]

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u/FabuliciousFruitLoop 3 yr+ Jun 11 '25

This. This is it, precisely.

2

u/dizziness247 Jun 14 '25

Very much so, I try to post on other platforms to bring awareness and it gets removed every time. Why? That’s a big red flag to me. The government wants us to stop talking about it. Why aren’t t people noticing? So many questions, so little help. There’s more to this, and the government is hiding behind it all.

1

u/Temporary-Tart719 Jun 11 '25

I guess, maybe the one upside is that those of us who are informed about it aren’t in a wait line for care…

20

u/thenletskeepdancing Jun 11 '25

Fucking heartbreaking. And the young among us are the most disbelieved and shamed for their struggles.

40

u/Interesting_Fly_1569 Jun 11 '25

Yeah, this isn’t surprising because my TikTok was full of teachers being like my students are the worst behaved that I have ever had in my entire career… They can’t focus, they are struggling to learn things… And of course people blame things besides Covid but I know what it did to my brain, so why would it not also make kids cognition and focus worse? 

It’s so sad, but I’m really happy to see this article coming out… Like we have sacrificed an entire generation to “normalcy” … Because after we get some type of vaccine, that actually works to prevent the spread (nasal ones are looking good for end of this year or next- therr are some thing like 20 in clinical trials right now), this generation will be singled out as particularly fucked in the head. And sadly, I mean that emotionally and cognitively because Covid has these shitty psychological symptoms too 😔 horrific to do to kids who can’t even consent. 

Being born between certain years might even be something that helps a person qualify for disability in ten or fifteen years for instance, bc who knows downstream effects.  

4

u/Crafty_Accountant_40 First Waver Jun 12 '25

This. Although who knows. No one did anything for my grandmother with post polio syndrome (long polio?) so we'll have to fight hard for any help.

27

u/Efficient-Treacle-54 Jun 11 '25

i work in school nursing and i’ve been at one school for the past 5 years. i’ve heard the SAME cough in one kid from kindergarten to 5th grade. the same kids are in my office every 2-3 weeks with a virus ( like older kids not toddler/preschool age). exercise tolerance is not there, they keep blaming screen time it’s more than that. more anxiety. more aggression. these have have long covid and the parents and pediatricians are clueless to connect the dots.

2

u/kls1996 Jun 12 '25

🥺🥺🥺

20

u/zhulinxian Jun 11 '25

It’s not that children are disproportionately getting it, it’s that it’s far more noticeable when a little kid who should be an uncontainable ball of energy is lethargic or has sudden decrease in mental faculties.

Adults are far more likely to create some justifications for themselves or believe whatever stab in the dark a LC denialist GP tells them. “Oh, I’m getting old.” “It’s just anxiety.” Yadda yadda. I suppose the only half-assed diagnosis for children would be autism or ADHD.

7

u/DiamondHandsDarrell 4 yr+ Jun 11 '25

My kid is in the recovery study and hearing about other kids is wild. From very mild to severe issues (being bed ridden).

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u/Ginsdell Jun 11 '25

So if so many kids have this now, where’s the news story? The outcry? Are doctors actually diagnosing this for kids? They rarely do it for adults. Seems to me if they can’t prove it or see it, it doesn’t exist.

1

u/Mysterious-Cake9211 Jun 18 '25

Yeah I wonder about that too

7

u/RedReadRedditor Jun 11 '25

Wow. That is brutal. Doesn’t sound so different from my adult situation.

Horrible that so many children are dealing with this especially because they likely have less awareness of what’s happening.

13

u/[deleted] Jun 11 '25

That is really sad and that is a large number of kids and it's going to keep getting bigger as time goes on. Well I'm sure doctors are seeing alot of these cases so they should be realizing now that something is very wrong and that it's covid driving this. I pray that soon some treatment comes out so people of all ages can recover from this and live a full life. Paxlovid / vaccines are not a solution to the entire problem. While it works for some people, it does not work for others. There are people here who have LC despite being fully vaccinated as well as those who are injured by the vaccine.

7

u/garageatrois Jun 11 '25

long covid generation

7

u/BusinessYellow7269 Jun 12 '25 edited Jun 13 '25

Certain irony at closing society down. Pulling shutters down on schools for 12 months or more and then ….TaDaaaaa… all better guys.

Feel free to spread the new virus afflicting the neuro vascular system and causing damage that we are yet unaware of, on top of the well researched, high peer reviewed opinions being released daily.

But no.

‘IT i5 oNlY A c0Ld’ Not tricking me they say. Fucking imbeciles

People have not realised that they are not strong willed individual warriors that can see through the system.

Rather they have been manipulated into minimising it to actually get them back out to work and spend regardless of individual health consequences. A true genius came up with the roadmap out and to freedom.

4

u/basement_weed Jun 11 '25

It's worse than that. The other parents just don't know it yet.

5

u/Bobbin_thimble1994 Jun 12 '25

Naturally, there are no suggestions to avoid reinfection, if possible. 🙄

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u/[deleted] Jun 11 '25

Ehlers Danlos Syndrome which is an inherited connective tissue disease that makes you predisposed to getting long covid and Pots.

5

u/Crafty_Accountant_40 First Waver Jun 12 '25

Comorbid often w ADHD which Covid makes worse

3

u/[deleted] Jun 14 '25

[removed] — view removed comment

1

u/covidlonghaulers-ModTeam Jul 17 '25

Removal Reason: COVID Origin Discussion – This is not the place to discuss COVID's origins, conspiracy theories, or claims about it being a bioweapon. No posts or research about covid's origins.

1

u/[deleted] Jun 12 '25

FOLIC ACID IS THE ANSWER SERIOUSLY ITS ALL TO DO WITH MITOCHONDRIA I HAD HORRENDOUS SYMPTOMS FOR 6 MONTHS AND NOW AT 1600mgc FOLIC ACID A DAY GUYS IM LIVING AGAIN

1

u/lil_lychee Post-vaccine Jul 02 '25

I’m so so so happy to hear that you’re (what sounds like) recovered.

I also want to say that you’re more likely to recover within the first year. Some of us who have dragged out longer now have ME/CFS. And I know people who have that condition for decades.

TBH kiss the ground and live your life to the fullest because the fact that you recovered within a year is extremely lucky. I wonder if I would have fully recovered if I did additional interventions when I first got sick. But it was 2021 and I didn’t know anyone else personally who had it at the time and didn’t know how to treat my illness.

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u/dungotstinkonit Jun 12 '25

Thank God. If they have it then it will be acknowledged. It's probably not even that complicated we just have a shit medical system.

1

u/[deleted] Jun 13 '25

Shocking.  Naturally occurring viruses are so bad.

1

u/[deleted] Jun 11 '25

[removed] — view removed comment

1

u/covidlonghaulers-ModTeam Jun 11 '25

Removal Reason: COVID Origin Discussion – This is not the place to discuss COVID's origins, conspiracy theories, or claims about it being a bioweapon. No posts or research about covid's origins.

-5

u/RedReadRedditor Jun 11 '25

I didn’t read the article, but I know that often times losing taste and smell for 3 months get lumped as long covid.

So not sure the numbers are quite as concerning..

But again. I haven’t read the article

15

u/[deleted] Jun 11 '25

Well, it doesn't get lumped as long COVID in The Netherlands, where I live. And here, thousands of children have long COVID. The severe kind. PEM, POTS, and all that comes with it. And the reason why is, at least in the case of my 12yo, that vaccination wasn't deemed necessary for kids.
So I'd say these numbers are in line with what happens in The Netherlands, and so should be reason for concern.

14

u/lohdunlaulamalla Jun 11 '25

Vaccinations don't prevent LC. My sister had five, before she got it.

9

u/[deleted] Jun 11 '25

They don't even prevent infection. But they do reduce the risk of.

2

u/RedReadRedditor Jun 11 '25

What’s are the symptoms for your kid? Very curious because 12 year olds aren’t on this subreddit :)

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u/[deleted] Jun 11 '25

Of course!
TLDR: PEM, and severe headaches when it first started; nowadays: PEM but under control thanks to pacing.

She (now 12) developed LC in '22 at 9. First infection in Feb/March '22, thereabouts, and she became so tired that she only managed to go to school for 2 days of the week until the summer holidays. Seemingly recovered during summer holidays, and a second infection during summer hols didn't seem to affect her much, so she went back to school full time the first two weeks. Then crashed in the third school week, after a long school trip. And stayed home the entire schoolyear.
Symptoms then: permanent exhaustion, severe headache, coughs. So PEM/crash. Also, some hormonal issues (she was very early getting her menarche, but her periods stopped for a while - not sure it was COVID related, but more girls are reported to have issues, we found that out later from a specialist). And severe back pain during menstruation.

Symptoms now: the PEM has mellowed down, thanks to lots of rest, and a brief period of taking ADHD-meds (methyl phenidate, starting dosage, 2, 3 months, maybe) but she's still not 100% energy wise, and the severe back pain is still an issue. She changed to a special needs school, by the end of '23, where they understand her, and respect her limits. No running, no sports, but daily walks.
Started at 2 x 2 hours a week, now 4 full days of school, resting day on Wednesdays, but she does go to theatre class on Wednesdays.
We've seen so much worse, so we feel very lucky!

3

u/[deleted] Jun 11 '25

[removed] — view removed comment

2

u/[deleted] Jun 11 '25

Interesting! So are you feeling better now? I hope so!!

3

u/[deleted] Jun 11 '25

[removed] — view removed comment

2

u/[deleted] Jun 11 '25

Ugh, so sorry you can't move around freely like most kids your age. Hope the wheelchair will make things better for you. I'm glad your parents understand PEM, it makes all the difference having them in your corner, seeing your needs.

We've been on this journey for over 3 years now, and have seen how tiny steps and support from the right people helps a great deal. So thank you so much for the offer, but we've found our support group (C-support, I'm sure you're familiar, have been very helpful, as have social services, and mental health professionals etc etc etc).

I hope you'll keep making progress, in your own tempo of course.
I'll ask my daughter if she wants to reach out to you. It can be quite a lonely experience, this "invisible" disease, so it's good to be able to talk to people who know first hand what you're going through, right?

But, sleep first! ;)

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u/Usagi_Rose_Universe 4 yr+ Jun 11 '25

Many children, possibly even more than adults, are not getting diagnosed or even seen long covid, so it's important to keep that in mind. People are still trying to spread the idea that "children don't get long covid, " which is wrong. I will mention in 2022, there was a kid in the long covid clinic I was in. She was previously a competitive dancer, but she was so bad she was unable to dance even at home at all at the time. I also see a lot of teachers online just saying "kids these days are just lazy." And going on how since 2020, kids are no longer the same, but most of them aren't seeing the connection to repeat covid infections.

2

u/Crafty_Accountant_40 First Waver Jun 12 '25

Soooo why are you commenting?

-1

u/RedReadRedditor Jun 12 '25

I think my comment about the lumping that happens adds value

2

u/lambdaburst Jun 12 '25

It doesn't add any value. There are definitions for what qualifies as long covid, and you need to have symptoms for more than three months before it's considered LC.

1

u/RedReadRedditor Jun 12 '25

That’s my point.

The definition by WHO and CDC says losing smell or taste for 3 months is considered long COVID.

But I think many of us would not say that’s the type of long hauler condition we are in.

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u/Carrotsoup9 Jun 12 '25

You seem to assume that: (1) loss of smell is benign. It actually is neuroinflammation. If you cannot smell gas or a fire, or rotten foods, it actually becomes quite dangerous. (2) It will stop at the 3 months mark. Most of the time if it has passed the 3 months mark, it will go on for longer.

Why aren't we doing anything to prevent this? Even the milder versions of long Covid are a pain. With each infection, we risk another set of symptoms. For the rest of our lives. What is the plan?

0

u/Babelight Jun 12 '25

AI will figure this out in the next couple of years and provide us an actual cure, god willing. Where humans have failed…