Thread by @HelenMMGoss

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

Some episodes last 30 mins, this one lasted 2+ hours, her longest was ~6hrs.

There have been times where I was scared for my safety, her safety, the cats safety.

Unsure if I should call an ambulance, CAMHS or the police... or if the neighbours would beat me to it.

#PANS

4

Audio hallucinations are part & parcel. Good names tho!

When she calms (and is dosed with anti-inflammatories) she is apologetic & horrified at her behaviour.

She regularly asks "what's wrong with me?" "when will I stop being like this?" "why is this happening to me?"

#PANS
5

Back to giggling and chatting like the fire has been dampened. But the ashes are still smouldering - notice the stutter. Sometimes this is when the tics kick in.

Sometimes the tics won't stop and will reignite the fire.

The inevitable "#PANS hangover" follows the next day.

6

#PANS is more than explosive rages, tics & hallucinations. There's urinary incontinence, sensory processing dysfunction that can get so bad that bright lights & loud noises are physically painful. It's hell.

It's a big reason why we've recently become a single parent family 🙁

I'd never heard of #PANS prior to #COVID19. We were lucky; a very kind person, now a friend, heard me doing an interview on @BBCRadioScot & found me on social media.

Soon after, she was diagnosed #PANS by her NHS Paediatrician. Although treatment had to come from elsewhere.

I'm sharing this with Anna's permission to raise awareness of #PANS triggered by #SARSCoV2 #COVID19 & to help others understand just how horrific it can be.

#PANS + #LongCovidKids? Two for one. Double-whammy of 💩 My poor girl.

Learn more @PandasPans

longcovidkids.org/post/what-is-p…

Didn't expect this to blow up but thank you to everyone raising awareness of #PANS, #LongCovidKids and other conditions associated with #SARSCoV2 🙏🙏

Lots of people asking how she is now and if she managed to get treatment...

She's stable, found a baseline, and yes!

Cont...

Thanks to the incredible families @PandasPans & the support of those in @LongCovidKids services, we found a Professor of Paediatric Immunology in London (private self-pay 💸💸)

Half the battle is finding a clinician who knows #PANS & is willing to treat. He gave me my girl back.

6 months of antibiotics, prescription anti-inflammatories, high dose antihistamine & melatonin.

After only 1 wk the difference was night & day. Like the mist had lifted 🎉

It's not a complete cure, but symptoms are significantly less. Of course the #LongCovid symptoms remain 😔