Thread by @SafeEdScotland

inews.co.uk/news/doctors-m…
"James was six when he had PIMS. He was misdiagnosed twice at a local hospital and eventually treated in intensive care at St Mary's, Paddington.
...
The rare post Covid condition is sometimes missed multiple times by medics"

"parents fear the situation will get worse with the end of free coronavirus testing."

PIMS – Paediatric Inflammatory Multisystem Syndrome
"PIMS is caused by the immune system which fights off the virus but then over-reacts to affect other parts of the body."

"prompt diagnosis and treatment are essential for best outcomes with PIMS, as delays can lead to life changing heart and organ damage and sometimes death. Diagnosis is challenging, however"

PIMS "symptoms are multiple and mimic other childhood illnesses, such as chicken pox and scarlet fever.

The syndrome originally emerged in children in 2020 during the first few months of the pandemic. But two years on diagnosis is still a problem"

"One mother in the parents’ PIMS support group, said: “I called 111 four times during these 5 days [my son was ill] and each time they thought he had gastroenteritis. This, sadly, seems to be the repeated story for many of us."

"It was five days and four appointments before my son was admitted and he ended up on a ventilator and was in hospital for nearly three weeks.

“So many of us were initially turned away or misdiagnosed – after all this time, this shouldn’t be happening anymore.”" #pims #MISC

Doctors need to recognise PIMS in kids: "A survey by the group suggests that most cases are misdiagnosed at least once, more than a quarter were missed twice, and more than one in 10 (14 per cent) had still not had the condition correctly identified after three consultations."

PIMS: "The research suggests GPs, NHS 111, hospital casualty departments and paediatricians have all been misdiagnosing the syndrome.
Alexander Parsons, from Plymouth, was just 8 months old when he died in 2020. His illness began with a pinprick rash that quickly spread all over"

"Doctors initially diagnosed Alexander with Kawasaki disease, a more common condition that causes similar symptoms. But since then they have linked his death to PIMS"

PIMS: "There are no specific blood tests to diagnose the syndrome so doctors look at the symptoms to work out if someone has it. The main one is a high unremitting fever for more than a few days. Others include a rash, tiredness, red or cracked lips, red eyes and peeling skin."

"The Covid-19 PIMS-TS parents support group was set up on Facebook in October 2020 by Alexander’s parents. With misdiagnosis of the dangerous condition continuing they want a National Awareness Campaign to make sure medics, parents and schools understand the symptoms."

PIMS in kids after covid undetected by doctors: "The parents emphasise that despite misdiagnosis often occurring, once the correct diagnosis has been made subsequent treatment is “brilliant”."

Doctors overlook PIMS/MIS-C in kids after Covid

"Support group spokeswoman Joanna Buckmaster said: “It is not good enough for people to be left to find out about PIMS-TS, they need to be told. Despite the wonderful efforts of NHS staff, misdiagnosis sadly still occurs.”

"The group wants PIMS symptoms to be on all NHS online platforms, GP patient apps, school parent apps and sent out with all positive PCR results in children and young people. It fears that when free Covid testing ends PIMs cases will be even harder to spot."

Undetected PIMS after Covid: "Ted became very ill with a fever. “About two weeks before Ted went into hospital the school called us to come and pick him up saying he’s got chicken pox, which was strange as he already had that as a baby.""

"We couldn’t get a GP appointment so took him to a chemist who also thought it was chicken pox but that if the stomach rash didn’t expand in 24 hours it would be just a viral infection
“He felt bad after a swimming lesson and started vomiting – even after drinking any fluid #PIMS

"He was in a quite bad condition. We called 111 which said it was probably an infection. He got worse so after a second call to 111 they advised us to take him to the GP. I had to carry him by this point as Ted was quite limp."

"The doctor told us he had viral tonsillitis as he had spots on his tonsils, so gave us paracetamol and sent us home.

“Things weren’t improving so we saw the doctor again who gave us antibiotics but they didn’t help either and Ted was going downhill rapidly." #covidPIMS #c19MISC

"We knew something wasn’t right. By this time the GP recommended taking him to hospital where they said he’s either got foot and mouth, scarlet fever or glandular fever. His rash got even worse by this stage, then his blood pressure dropped – that’s when they thought it was PIMS"

"“The hospital told me they are seeing 1-2 children a week with this condition so I’m surprised they didn’t see it earlier. And Ted was one of two with PIMS in hospital when he was there. He ended up spending 11 days on a High Dependency Ward before we got him home.”"

"Specialists at Great Ormond Street Hospital (GOSH) in London are running several research trials into the condition and are still learning how to treat PIMS in the best way possible." #pims #multiInflammatorySyndromeInChildren #misc

"The current aim is to “turn off” the immune system to stop the inflammation & then to “reset” it to reduce the risk of long-term damage.
PIMS is currently treated with a combination of medicines including corticosteroids & anti-clotting medicines, such as aspirin & dalteparin."

"Children who have been discharged from intensive care are still experiencing brain fog, general fatigue and changes in appetite among other symptoms. There is no need to “shield” or stay isolated if a child has had PIMS."

"The advice on GOSH’s website states: “PIMS can affect your mind as well as your body so be aware of your mood once you get back home. It’s normal to feel anxious, moody & irritable. This is down to PIMS as well as the everyday disruption that Covid-19 has brought to everyone.""

"A GP would not be required to diagnosis the condition, but would be expected to identify that a child is unwell and requires emergency assessment in emergency departments."

"An NHS spokesperson said: “All paediatricians are aware of the potential diagnosis and case definition for PIMS-TS, and cases should be identified using NICE and Royal College of Paediatrics and Child Health guidance.”"

"‘He didn’t have a rash, peeling skin or red eyes’
Lorraine Bold, 41, from Enfield, north London, is an administrator at a secondary school. Her son James was six when he had PIMS. He was misdiagnosed twice at a local hospital and eventually treated in intensive care"

"he came home with a headache. He didn’t eat dinner after football training, which was strange, and then lost his appetite the next day too so kept him at home. My mum thought he was a funny colour and wanted to get him checked out." #pims

PIMS in kids: "“He had a temperature but no ear infection or tonsillitis, so they didn’t know what was wrong and sent us to A&E. We eventually saw a paediatrician who said ‘it’s a viral infection, go home’. But James wasn’t right at all. I thought he might have sepsis."

"“James wasn’t ticking all the boxes of PIMS – he didn’t have a rash, peeling skin or – at this point – red eyes. I phoned 111 who said ‘call an ambulance’. The paramedics said I was overreacting but eventually took him back to the hospital where his blood pressure dropped" #PIMS

"they finally thought it was with PIMS. He got more symptoms by this stage too – fluid on the lungs, inflammation of the heart, and red eyes by this stage.

“After a night in resus we were sent to the specialists at St Mary’s where he spent 5 days in ICU and they were brilliant."

"It’s frightening and traumatic as a parent and strange when people say it’s so rare, as there’s a child in our town who goes to the same drama school as James who has had PIMS. Doctors are still not aware of it, even now.”