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
4) plaster to his body barely being able to pump its own heart. He's got a long road to recovery ahead of him and nobody knows what long-term effects it may have on his little body.
We have to take one day at a time and we know our little fighter will beat this and come home
5) smiling soon.
Please take the time to read about PIMS, be aware of the symptoms and how quickly they can deteriorate, don't ever take things for granted as you never know what's around the corner.
evelinalondon.nhs.uk/our-services/h…
6) We were home for 1.5 wks after an Ecg, with results of enlarged arteries & Marley still not being able to move around we were admitted back to the hospital.
We have been back in hospital for 4 days now and he seems to be responding to steroid treatment for joint swelling
7) however, we are still awaiting CT results for his ❤️. The @EvelinaLondon is currently forced to cancel paediatric #LongCovid appointments due to lack of funding. @MattHancock @JimBethell we desperately need these services funded 🙏🏼 #longcovidkids
longcovidkids.org

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Keep Current with Long Covid Kids 🧡💙🧡 #LongCovidKids #FBLC #FBLCK

Long Covid Kids 🧡💙🧡 #LongCovidKids #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
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
31 Mar
💈WOW 🤩

This school rocks!
We need to reduce #Covid_19 in transmission in schools.

Great to see this headteacher taking a proactive approach to #makeschoolssafe and going beyond the inadequate @educationgovuk guidelines.

@BBCSouthNews
#CO2monitors
@Dr2NisreenAlwan
We don't want your kids to share our story.
The only way we know how to reduce #longcovid is to avoid #COVID
Download your school pack to understand more about #longcovidkids & how to reduce risk in your school.

longcovidkids.org
#LCKSchoolpack #LCKMaskHeros
Read 5 tweets
30 Mar
💈THIS ⬇️⬇️⬇️ is what happens after a 'mild' dose of #COVID19 .

Who is following up on the 'mild' cases?
Who is giving these kids support?
Who cares that they have been stripped of opportunities?
Who cares that parents are losing their jobs while caring for their children?
💈Who is giving guidance to school attendance officers who issue fines?
Who is creating a clear child-focused awareness campaign to help families and carers identify asymptomatic infection?
Who is funding CO2 monitors to reduce transmission?
💈Who is arranging financial support to a parent unable to work they are now a full-time carer?
Who will change the questions on the @GOVUK 'book a test' website to inc kids symptoms so parents don't have to lie?
#LongCovidKids
Read 9 tweets

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