Thread by @LongCovidKids

1) #longcovidkids Group post.

16 mths of fighting to get a diagnosis.

“Finally had in writing confirmation today from my kids #neurologist to my #GP that they both have #PIMS / #MISC, along with #postcovid immune mediated neuropsychological syndrome/#PANS and #longcovid,

2) Took 16 months of fighting for them to get heard!! How many of our children have some form of PIMS/MISC that has gone unacknowledged and untreated for so long!

I think there’s so many unrecognised by medics to greater or lesser degrees but it’s all the same

3) - Inflammation & immune mediated response!
My children had a 40 + temp for 3 wks solid and dangerously low oxygen levels (85%) and struggled to breathe every day, blue lighted to hosp yet medics couldn’t wait to get us out and gave us virtually no help. I

4) prayed every night at home they would wake the next day as I honestly thought they wouldn’t because they struggled to breathe so badly and their temp was so high and their pneumonia cough was so bad but felt lost and alone! It’s so clear to me it’s been PIMS/MISC but just

5) constantly fobbed off!! Finally it’s acknowledged! Keep going parents, it’s a bloody battle for our kids and a long road”

These children were seen by the @NHSuk & privately This parent has spent every day calling, writing, researching to get their children the diagnosis.

6) needed to ensure they can access support.

This the reality of caring for a child living with #longcovid #longcovidkids

Please ask your school about there mitigation measures. Write to you MP. Send them all our #lckschoolpack.
Download ⬇️⬇️
longcovidkids.org

#longcovid is not rare.
#longcovidkids
@kidsCovidGamble @SafeEdForAll_UK @jneill @grahamja51 @long_covid @LongCovidSOS @Ecole_Oubliee @apresj20 @ZeroCovAlliance @LaylaMoran @sajidjavid

https://twitter.com/longcovidkids/status/1423307551798665221