Group Posts.

“Only 6 weeks in & I take my hat off to all of you as I’m at breaking point
She has no taste, smell, continued head & eye pain untouched by painkillers, breathless, tight chest, fatigue.
Admitted to hospital in week 3, treated for #PIMS then decided it wasn’t
that and that it’ll be ‘long covid’ and dismissed.
Gp won’t help as he said it’s got to be 12 weeks”
Group Post

“16 year old daughter. Covid contact at start of September but tested negative. Been progressively getting sicker. No taste so struggling to eat, extreme fatigue but can't sleep, headache that she can't get any relief from with painkillers, body aches, dizziness,
breathlessness, brain fog, no concentration (can't even read a book), disruption to periods, pale and drained. My heart is broken. Prior to this she was a very fit girl who irish danced at a competitive level, had just started her A levels (3days in but hasn't been at school.
since start of Sept)
GP has finally agreed seems likely its covid.
Has started antidepressants as her she's starting to struggle mentally now too. Also on migraine medication but it doesn't help the headache. Awaiting referred to paediatrics”

#LongCovidKids
Group post.

“Totally changed my daughters life, had covid twice now, has gone from healthy and happy, to now an asthmatic who is anxious, tired, regular headaches, stomach pains, altered vision, unable to join in with exercise and games, struggling at school massively
both mentally and physically, not the same happy little girl she once was”

#LongCovidKids
Group post.

“Coughing , Scarring and shadow on lung, short of breath, chest pains, heart races. Struggles to run around with her friends like she used to. Sports are challenging. Uses inhalers now. Age 8years.
(Covid March 2021 )”

#LongCovidKids
Group Post
“Gastro /neuro symtoms. On a diary & wheat free diet. 11 mths in we had two appointments this week, next week she has MRI, endoscopy, colonoscopy & ph study. She is on 4 medications & is doing a trial of antibiotics this week. 7yr old #longcovid for 1/7th of her life”
Group Post

“Regular feels faint or faints , breathlessness fatigue no smell has funny taste hates the food he loved aswell as drinks taste funny ,12 months on diagnosed #longcovid awaiting pediatrics in Dec but he is 15”

#LongCovidKids

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Keep Current with Long Covid Kids HQ 🧡 #LongCovidKids

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More from @LongCovidKids

1 Nov
1/3 At least 14% of children who get #COVID19 will get #LongCovid.
All children are exposed to #COVID19 & are likely to get infected.
The @UKHSA has not provided a #COVID symptom list.
Families are confused when to isolate or test.
Without a +test it is very difficult to
2/3 get medical care & support (it shouldn't be but it is).
Without a diagnosis, children are "pushing through" symptoms which we know has a detrimental effect.
The best option is to avoid infection, but this isn't available to CYP who have to attend school by law.
So as you
3/3 can see, a list of symptoms would be very helpful in reducing the overall impact on pediatric health.

@sajidjavid this is a crisis altering the lives of children.
The @CDCgov has a list, why don't we?

⬇️These are from the #nhs website & are NOT the main symptoms in kids
Read 4 tweets
31 Oct
Group Post

“My teen D just broke down 😢 shes had thoughts about self harm. She can’t take #LongCovid anymore, she feels empty. She has been keeping it from me as she didn’t want to bring me down as I’m still ill too. We are so broken and I can’t help her”

#LongCovidKids
Group post

“5 year old and 7 year old. Cried in pain with there stomachs every night for a year. Had to sit out of pe, give up there active hobbies. Always tired can’t run around like normal children. Doctors and pediatrician can’t help”

#LongCovidKids
Group post

#LongCovid has stolen two years from us ..... that sums it up.”

This is living with #COVID19

#LongCovidKids
Read 10 tweets
2 Oct
1) Pre results from hospital's medical examiner indicate that Jorja had Covid myocarditis from #COVID19
#Sept10❤️
We wrote to @hantsconnect to ask why schools were refusing to put donated CO2 monitors in schools -7th Sept -Ticket ID 104074873
#longcovidkid
thesun.co.uk/news/16308491/…
2) On the 10th of Sept we received an email stating our enquiry had been passed to the "Assistant Director – Education & Inclusion"
We have yet to receive a response.

Our heart breaks for Jorja, her family & her community.
THIS IS #LIVINGWITHCOVID @TheSun
#Sept10❤️ #hampshire
3) We are aware of a #Hampshire school that refused the donation of #CO2monitors in favor of waiting for the same brand to arrive from @educationgovuk
😫MADNESS 💔
They also told the family that their daughter would be "exposed to #COVID19 the same as all other viruses"
Read 5 tweets
30 Sep
Webinar 3 underway. - Real time Indoor Air Monitoring

Pollutants and sources.

#longcovidkids @better_indoors

#ProtectTheKids #makeschoolssafe
#BetterAirInSchools @SafeEdForAll_UK Image
What are we constantly exposed to?

Indoor Pollutant Thresholds

Those who warn about pollutants Without mentioning indoor the context of ambient or indoor air quality are scaremongering.

Real time monitors provide visibility.
We can’t see what we breathe.
#longcovidkids Image
We are constantly breathing levels of ozone.

Oops I missed the figures. Watch the video on YouTube later to catch them. 😬
Read 8 tweets
23 Sep
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
Read 10 tweets
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

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