Helen Goss Profile picture
Mar 28 8 tweets 12 min read Twitter logo Read on Twitter
Day 1 of @itvmeridian #LongCovidKids series by @StaceyPooleITV

Hannah, 14: "It's like your whole world comes crashing down... I've just been thrown into this & I don't know what to do."

🧵1

#LongCovidKids #LongCovid #COVID19 #MedTwitter #EduTwitter @DrGregorSmith @jasonleitch
Hannah: "It almost doesn't feel like my body anymore.. It's just, not me."

Emily: "It just felt uncontrollable. I've never felt that sort of pain before."

Ems Dad: "It's been a living nightmare"

#LongCovidKids #LongCovid #COVID19 @LindaBauld @haughey_clare @JimFairlieLogie
2/
The impact on the entire family can be devastating. "A horror story."

Emily was a healthy, happy, active child & now is registered disabled with significant mobility problems. Not seeing her friends has made her depressed, anxious & angry😔

#LongCovidKids #LongCovid #COVID19
3/
"I can't think of things straight & it all comes in a weird muddle, in a mess"

"It's life-changing. I thought I was fine, I just had a sniff & a cold but then actually I've become like this. So just, be careful."

#LongCovidKids #LongCovid #COVID19 @JohnHardenED @mairi_stark
4/
Day 2 of @itvmeridian #LongCovidKids series by @StaceyPooleITV

Logan, 12: "Dad, what's going on? Why is this happening to me?"

"I'm always tired. I've got a lot of pain in my head & my joints."

#LongCovidKids #LongCovid #COVID19 @1goodtern @DrRanj @DrAnnaNZ @JTSglobalhealth
5/
"You don't cope with it, as a parent. You put on a brave face and you try to say the encouraging things to keep the spirit in your home uplifted. You tell people that he's doing alright because you don't want to burden people by telling the truth."

#LongCovidKids #LongCovid
6/
Hayden, 14, has been bedbound for over 2 years: "I might literally move from my bed to my chair, all in one room, and that will be my whole day"

Kath: "He couldn't understand a simple conversation. It would be like my Dad who had vascular dementia."

#LongCovidKids #LongCovid
7/
Hayden: "I have to be cautious about hope" [for recovery]

🏴󠁧󠁢󠁥󠁮󠁧󠁿 has Long Covid clinics which have varying reports from families.

In 🏴󠁧󠁢󠁳󠁣󠁴󠁿 we have no clinics. A postcode lottery on Paed pathways. Majority of 🏴󠁧󠁢󠁳󠁣󠁴󠁿 families have no choice but to go private.

#LongCovidKids #LongCovid
8/

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More from @HelenMMGoss

Mar 3
What's it like to have a kid with #PANS?

Not these🍳🍳
👉 Paediatric Acute-Onset Neuropsychiatric Syndrome.

In March '20 we had #COVID19 for the 1st time. #SARSCoV2 triggered #LongCovidKids & #PANS. We've since had 2 further infections. Each one has made her worse.

🧵

1
I can't describe #PANS because words don't capture the horror of your sweet, shy, polite little girl turning into what can only be described as a cross between Samara from The Ring and a full on banshee vampire intent on vengeance and destruction.

TW: Video IS distressing.

2
This is not bad behaviour. This is caused by a misdirected immune response to infection = widespread inflammation, including in her brain. Her brain is on fire.

She has absolutely no control. She screams until she wretches (and on occasion, vomits) It's scary for her. #PANS

3
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