Group Post

“9year old had #covid in September and had continued to have dizzy spells and back pain. this week his lung has completely collapsed and needs major surgery...has anyone had this happen?”

#LongCovidKids
Group Post
it is so sad to read how many children are suffering right now.

After mild COVID my S has

Extreme tiredness (able to stay awake for 4 hrs at a time)
Conjunctivitis x 2 (antibiotics)
Tonsillitis x 3 (antibiotics)
2 bouts of Gastritis (with acid reflux) & sickness.
Group post.

My 9 yo tested + mid sept. She didbt have typical #covid symptoms....had tummy pains, nausea, headaches, extreme fatigue. Was fine to return to school after 10days but still bit tired. Week later had bad cold virus along with bad tummy pains and nausea. Dr thought
appendicitis as in so much pain so sent a&e, ruled out appendicitis, said virus plus tummy bug as started vomiting in hospital. Given omeprazole for gastro symptoms incase stomach bit inflamed. 5 weeks later no better re tummy pain nausea and sore heads. Anyone else had similar?
Group post.

My D is currently in floods of tears, after call with her chronic pain team. The psychotherapist in the team said she needs to be in school for lesson every day, building it up to more lessons, yes it will be tough, she will have chest pain, over stimulation,
headaches, fatigue etc, but needs to be in school. They feel that part of her long covid is due to her anxiety and bullying issues at schools so she needs to go in and face them and put up with feeling ill.

#LongCovidKids
Group post.

“I'm really disheartened today, my sons Paediatrician emailed me back saying she won't give him any more melatonin to help him sleep , she gave him a month's worth to see if it helped and it has. He had been falling asleep at 6am everyday for the last 5 months +”
Group post.

“Just got back from a hospital appointment for my child who is nine weeks in and they thought it may be depression as we lost his Mum three years ago. Absolutely stunned.”

#longcovidkids
Group post.

“My 9 year old baby girl, she should be living her best life with no cares in the world. Instead she is now in a wheelchair in pain daily.
I am angry at our goverment for sending our children back to school. I am angry that this happened to her”

#LongCovidKids
Group post.

“When the hairdresser refuses to cut your sons hair because he has long Covid 🥲”

#LongCovidKids
Group post.

“My heart is hurting for my 10yo d. She has been on activity restriction for almost two weeks now due to chest pain, dizziness, headaches and irregular heartbeat. I had to pull her out of school Monday because they called me 3 times in one week to pick her up due to
these symptoms. She will be on the activity restriction until she sees the cardiologist sometime next week. Tonight she had a little breakdown. She is over this restriction and just wants to be an normal kid. She kept saying she just wants to play and do stuff. #LongCovidKids
Group post.

My 11yo got C in August. Since then she has good /bad days, spiked fever 3 x. The pediatrician will write a letter to cover a few days,they have decided to do some testing due to these weird headaches she's having and she has an MRI scheduled. She has missed 10
of school already and now the school is sending me letters about her absences. What am I supposed to do? I'm not sending her to school sick and her Doctors won't cover every day she has been out. I can hope that she gets better and stays that way but if this continues she could
miss a lot more. How do I handle this with the school so I'm not being threatened with court all the time because I'm doing the right thing and taking her to the doctor and keeping her home when she has a "flare up"?

#LongCovidKids
This is living with #COVID19
“Agonising, burning, spreading, peeling, weeping, repeatedly infected legions”

One mother describes her daughter

“16 yo d.... diarrhoea for 10 mths, legions for the same amount of time, agonising abdominal pain, spinal pain, hip pain, walking on
crutches, fever constantly, head ache, racing heart beat, loss of sight and hearing on right side, brain fog and absolutely overwhelming exhaustion!”

This is the 4th time we have seen this in our group.

Each time the child has been accused of self harm.

#LongCovidKids
“ 8 different antibiotics, 9 Antivirals, many many swabs taken only coming back with anything if a sore is oozing and infected.
Sores tested for Impetigo a few times, shingles, other herpes virus - negative. So many swabs, bloods tests and now a biopsy”🙁
#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
31 Oct
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,
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

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