1) "A change to the main list of #COVID19 symptoms is “in process” after months of inaction"@PHE_uk
"how can we expect families to know when to get their child tested, & when to stop sending them into school so that they then reduce
#longcovidkids
bit.ly/3o0FAd0
2) the risk of transmission"
LCK would like to see the 🇬🇧 #COVID19 symptom list align with the @CDCgov 🇺🇸 list which includes the symptoms that our families have been reporting since LCK started.

A source who used to work for #testandtrace highlights
3) that clinical caseworkers were identifying trends in the variability of symptoms in kids as far back as a couple of months after the service went live in 2020.
Concerns were fed back continuously but the guidance about what symptoms
#TestToProtect
bit.ly/2W7jIB6
4)should trigger the need for a test was never updated. Initially, it was felt that perhaps this was linked to test capacity but since that has been expanded they are surprised that the symptoms have never been updated or that there hasn’t been clearer public messaging on how
5) #COVID19 infection can present differently in those of different ages.
They wouldn’t be surprised if the presentation in those who have been vaccinated has also changed and that the cough, loss of sense of smell/taste and fever are no longer helpful as the only symptoms that
6) trigger testing (and have not been for some time). Equally knowing that they shouldn’t have ordered tests without one of these three symptoms people may have lied to tracers and they were advised not to advise contacts go for a test unless they were experiencing one of these
7) three symptoms even when there were other #COVID19 cases in the house and therefore it was highly likely that the child with the runny nose also had the infection.
Tracers collate all symptoms someone has experienced at the time of the call - at times when the system was
8)overwhelmed this may not have been until 5 days after symptoms started and there were definitely signs that children developed one of these three symptoms later in their illness. These were not differentiated in terms of onset and it was only through tracers reflecting on cases
9) together that different patterns emerged.

PLEASE CONSIDER SIGNING OUR PETITION
#longcovidkids #livingwithcovid
@SafeEdForAll_UK @ZeroCovAlliance @ResearchAidNet @LongCovidSOS @long_covid @ClaireHastie1 @maxwele2 @mdbuckle @LCKIreland
chng.it/nZ2KRKhd
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More from @LongCovidKids

20 Sep
🚨Around 1 in 150 child Covid-19 infections are admitted to hospital
🚨60% have no underlaying health conditions
🚨80% are admitted “with” Covid
🚨88 childen have died
🚨Asymptomatic, atypical and mildly symptomatic children are suffering #LongCovidKids which is multisystemic
Read 4 tweets
4 Sep
1) 💔 Written by a teenager who has #LongCovid, for a #EHCP application.

What are the child or young person’s views, wishes and feelings about their education? What are their motivators?

"Education is a massive part of anyone's life and because I have been so ill I feel like
2) I have been stripped of qualities and learning that every other child has the right to.
I have spent many months almost a whole year lying in a bed not being able to do anything, not only education but normal teenage activities including meeting friends and living life,
3)
not only affects you physically but mentally too.
I see education as the groundwork for someone's life, what prepares them for the future, and being so ill, I feel like I’m way behind everyone else. Having that extra support would make a huge difference and help prepare me
Read 7 tweets
3 Sep
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies
Read 12 tweets
3 Sep
1) 🆘🆘🆘 SPOT THE DIFFERENCE 🆘🆘🆘

Without ANY mitigation measures in school, can we at LEAST ask for a decent list of symptoms to help families identify #COVID infection, please?

We are worried.

@NHSEngland @NHSuk @DorsetCCG @JimBethell @MattHancock @sajidjavid
2) The @CDCgov has a more comprehensive list to help families in the #USA identify infection, and they offer the #vaccine and #masks

#backtoschool #longcovid #longcovidkids
3) Here is our list - these are the symptoms families report their children and young people had.
And before the trolls their evening #LCK bashing YES we do believe ANY symptom could be #COVID
Read 6 tweets
3 Sep
1) 🌏🌍🌎🌍🌏

The experience of #longcovidkids members is that the activity levels of their children are significant.
Meet Joe
Time difference 10 mins
✅He can go to the park.
❌ He gets palpitations which he's had for 10mths he feels cold on the inside when they happen.
2) We will continue to tell the truth about #covid infection to educated families so that they can make informed decisions.
You can expect to see more stories showing children struggling with their health. This is a fraction of what the children and

3) young people are living with.
So far, everything we have posted, discussed, or raised concern about has been followed up (mths later) with research ...and it is still coming through. We have no reason to lie or exaggerate, our intention remains the
Read 8 tweets

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