What do we know about #LongCovidKids ?

We know that at least 8% of secondary age & at least 7% of primary age kids who get #COVID19 will get #LongCovid.

A quarter of children hospitalised still have symptoms at 8.5 mths

#LongHaulers
We know that #longcovidkids often report feeling brighter after 2-3 wks post #COVID19 infection & then develop #longcovid symptoms wks 4-6.
With the longest gap between infection & symptoms reported at 8mths.

Kids 🤒 in March 2020 are still reporting new symptoms.
What else do we know about #LongCovidKids ? We know that the top 10 symptoms reported in our survey are;

🚨 Gastrointestinal Issues
🚨 Chest Pain
🚨 Headaches
🚨 Fatigue
🚨 Joint / Muscle Aches Pain
🚨 Sore Throat
🚨 Dizziness
🚨 Rashes
🚨 Mood Changes
🚨 Nausea

#Kids
What do we know about
#longcovidkids?

Lets be honest with ourselves

🚨Its Russian Roulette🚨

The best way to prevent COVID harm is to prevent COVID infection in the first place

Unless you're a gambler, in which case go for it #Piers #COVIDisAirborne
We know that #longcovidkids children also report 90+ other symptoms inc;

⚠️ Brain Fog
⚠️ Concentration Difficulties
⚠️ Nerve Pain
⚠️ Insomnia
⚠️ Visual Disturbances
⚠️ Tinnitus
⚠️ Paralysis
⚠️ Parosmia
⚠️ Seizures
⚠️ and more
We know that #COVID19 persists in the gut and the brain and wonder if this can be attributed to the relapsing and remitting symptom patters that many families report.
We also know that some kids suffer consistently and are unable to find much relief.

longcovidkids.org/long-covid-kid…
We know that research is happening around the world 🌍 to help discover the mechanisms of #longcovid with many researchers and experts specifically focusing on #longcovidkids .

@lizWWyld @surf4children @DrMunblit @Tim_R_Nicholson @resiapretorius

longcovidkids.org/long-covid-res…

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Keep Current with Long Covid Kids Official HQ 🧡 💙🧡 #FBLC #FBLCK

Long Covid Kids Official HQ 🧡 💙🧡 #FBLC #FBLCK Profile picture

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More from @LongCovidKids

23 May
🛑7 months ago a mum started a group🙏 Add 1 co-founder🌷 and 2 other mums☀️☀️10 000 Twitter followers later, a support group for 3000 children, published research and fundraised CO2 monitors for schools, they work with these amazing groups as the voice for forgotten 🌈children🌈
Long Covid Kids (LCK) is currently supporting projects with;
Long Covid Kids Canada & Long Covid Kids USA
NIHR Long Covid Committee
NHS - National Health Service Long Covid Task Force
NIHR - National Institute for Health Research Expert Group
A number of leading children’s hospitals around the UK, and infectious disease pediatricians. Fundraising CO2 monitors for schools with Safe Ed For All. Sunday newsletter and FREE 64 page Awareness Pack here including comprehensive sectn ventilation

longcovidkids.org/resources
Read 5 tweets
22 May
1) One family shares their story in their own words. They are still in hospital, our thoughts are very much with them.
"In this covid obsessed world, you would never imagine your child being affected to the point where you believed there was a possibility you may lose them.
2) We are constantly told our children are not really at risk and unfortunately, this is what we believe.
So after we took Marley to hospital with possible tonsillitis and appendicitis symptoms there was a lot of confusion to what was wrong. A few days later he was rushed to the
3) @EvelinaLondon in an ambulance to intensive care and diagnosed with Paediatric Inflammatory Multisystem Syndrome (PIMS) caused by covid in children.
⚠️I want to make people aware of how serious this actually is.
⚠️Marley went from laughing about teddies on his blood test
Read 7 tweets
19 May
1) @EvelinaLondon paediatric LONG COVID CLINIC APPOINTMENTS CANCELLED - reason given - NO FUNDS AVAILABLE.
@MattHancock will the @GOVUK fund these vital paediatric services?
Can our children expect to receive the support of the @NHSuk?
Will the next cohort ImageImageImageImage
2) of infected children be able to access Long Covid services when they need them?
The so-called Indian variant is reported to be a higher risk for children, considering the @ONS prevalence data we are deeply concerned.
Please can you offer reassurance? ImageImageImageImage
3) One family shares their experience.
"We’ve been waiting months for this appt!
So that’s it! Pushed back to the local pediatrician (follow up appt currently booked for Jan 2022) who was lovely but admitted she knew nothing about long covid"
⬇️⬇️⚠️⬇️⬇️
facebook.com/longcovidkids ImageImageImageImage
Read 4 tweets
25 Apr
1) Welcome to all our new followers 🤗
#LongCovidKids runs on goodwill and support, so thank you for being here. #gratitude
What does LCK do though? If you are new, you might be wondering, so we thought we would a tweet thread might help!
We started ⬇️
bit.ly/3pU0oju
2) This brought lots of #longcovidkids families to our door, so we set up a place to connect & now support over 2000 families all facing the same challenges. Since December we have been welcoming about 100 families, often with multiple #longcovid kids.
facebook.com/groups/longcov…
3) We realised #longcovidkids was different to #longcovid so we set up the #LongCovidKidsStudy with @PeopleWithApp to learn more & support researchers & Drs.
Download the app to get involved & select Long Covid Kids to be involved.
bit.ly/PeopleWithAndr…
bit.ly/PeopleWithiOS
Read 17 tweets
24 Apr
Dr David Strain, a medical lecturer at the University of Exeter who runs long Covid clinics, says he is “seeing more and more cases of children who’ve got long Covid” and thinks the prevalence in children is probably underestimated. #longcovidkids
thetimes.co.uk/article/the-ra…
"There is no easy definition of long Covid. It’s “a bit of a hotchpotch”, says Strain, University of Exeter. “Although we talk about it as if it’s one disease, it’s very clearly multiple pathologies affecting different people differently"

#longhaulers #longcovid @thetimes
Read 5 tweets

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