UK-based, international charity for families & children living with #LongCovid #PIMS Patron: Michael Rosen https://t.co/QjkCJVG3tI
May 5 • 17 tweets • 10 min read
1) Are you taking parental leave or having a break from work to care for your children with #longcovid?
A parent asks -
“I am wondering how parents are managing their work life whilst their little ones are so poorly. So far I have juggled things and taken annual leave but
2) it’s difficult to see how this is sustainable with no end in sight.
Emily is 9yrs old, she contracted Covid in Sep21. She was admitted to hospital for 13dys in Nov due to severity of her #LongCovidKids symptoms.She now uses a walker as has severe pain in her back & legs.
"Spent all of Wed in hospital , to be told my child was fine - I've just had to pull her up the stairs to bed. She's too heavy to lift - couldn't even crawl up
I'm angry angry angry & feel so let down by the NHS & our Gov
Our children are like ghosts!! #LongCovidKids
"we got the results of S's extensive bloodwork. White blood cell count ⬇️and Iron &Vitamin D very low. Started him on Iron & Vitamin D,repeat bloods in 3 mths. It's not surprising he felt exhausted. They don't yet know why all this happened" #LongCovidKids
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
Oct 31, 2021 • 10 tweets • 6 min read
“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”
“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”
“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”
Oct 2, 2021 • 5 tweets • 5 min read
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.
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
Sep 23, 2021 • 10 tweets • 8 min read
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/3o0FAd02) 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.
🚨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
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,