A Sidcup mum has spoken out about the frightening experience of having two of her sons rushed to hospital with a rare new Covid-linked syndrome found in children.
Emily West’s children are among the first in the world to have multiple siblings suffer the affects of the new condition, which emerged in April last year with a cluster of cases in south east London, specifically the Thamesmead and Woolwich areas.
Now named PIMS-TS, experts at the Evelina Hospital London describe it as a rare inflammatory syndrome which has emerged in children, thought to be triggered by Covid-19.
Evelina’s Dr Jenny Handforth said it seems a large proportion of the small number of children who get PIMS-TS need hospital treatment, but patients have so far responded very well once in hospital care.
Emily now wants to warn other families to “vigilant” for the condition, as the early it can be treated the stronger the recovery.
The mother of four said her family’s battle with PIMS began back in May 2020, “right in the middle of the first lockdown.”
She suspects they may have all been exposed to Covid-19 at the very beginning, when testing wasn’t available, but by the time 13-year-old Lennie started feeling ill, they hadn’t bee out in weeks.
“One morning Lennie woke up feeling sick, experiencing stomach cramps and with a really high temperature,” recalled Emily.
“I assumed he’d eaten something funny, and he went off to bed, but I was sitting next to him asleep and I could hear his heart thumping and feel him heating up.
“The stomach pains got even worse, so we thought it could be his appendix, but I said to my mum on the phone that it was really strange.”
Emily took Lennie to Queen Elizabeth Hospital to get looked at, and after measuring his temperature on the door he was rushed in to be examined.
“It was then we realised he was really swollen, especially his ankles. They gave him fluids, and he turned a sunburnt colour with big red blotches, it was really scary.
“This was the first we heard of the new illness – the nurses mentioned they’d seen similar symptoms in a few local children in the past couple of weeks.
Lennie was blue-lighted from QEH to an intensive care unit at the Evelina Hospital London and for two days he was given a host of treatments.
“Fluids, steroids and more, and there were slight improvements but it was up and down, changing one hour to another, we couldn’t tell day to day.
“Hospital staff said they noticed what they thought was a new condition, although it was definitely linked to coronavirus, but they were also honest in saying they didn’t really know and were still trying to work out what it was.
“You could tell doctors were trying their best, and I just had to place 100% of my trust in the hospital.
“Lots of other children were being treated on the ward and nearby, most with the major symptoms, and a few with different ones like big nose bleeds. Then Lennie woke up one morning and complained about the noise of a hoover in another room.
“This turned into headaches, awful headaches that caused him to scream in pain.
“Then he suddenly started to turn a corner. When he ate for the first time again I could’ve cried, and from there he kept improving.”
“The disease was literally named as PIMS-TS whilst we were in the hospital,” she added.
Then in December 2020, the whole family were Covid tested, and Alfie, 11, was the only one to return a positive result.
Emily said: “The next morning morning, Alfie was burning up, and I was already thinking this could possibl be about to happen all over again.
“Soon he was complainging about stomach pains and had a lot of the same symptoms as Lennie. I didn’t wait around and took him straight to the Evelina this time.
“Whilst his bloods didn’t immediately show PIMS, with a day he was displaying all the symptoms, and was then suddenly being treated for the condition as his temperature shot above 40.
“The gave him the treatment in a different order this time, but again it was up and down until he eventually started improving. Within days he was back at home.”
Even now, both Alfie and Lennie still often feel tired, but appear to be recovering well.
Emily said was a “frightening” experience, and one she wanted to warn other parents about.
“It was so scary just to see your sons that sick, let alone with something new and unknown. And parents need to be aware that this is out there. Not much is out there, but recognising it could save someone.
“Just be aware, the longer it is left the longer it takes to recover. It is tough to know when to take your children in to hospital, you don’t want to pre-empt it. but it’s worth being aware and staying vigilant.”
Cases have been recorded in children across the world, but the cluster of cases in May 2020 included a large number of cases in south east London, and Emily added that one nurse told her they’d had a large number of cases from Thamesmead.
Evelina say the condition is a delayed reaction to the body trying to overcome the virus, so the symptoms are different to COVID-19, and many children who experience PIMS-TS may not have previously been unwell or had COVID-19 symptoms.
Symptoms of PIMS-TS can include:
- a prolonged fever (higher than 38C)
- tummy ache
- diarrhoea and/or vomiting
- widespread red rash
- red bloodshot eyes, strawberry red tongue, or red cracked lips
- swelling of fingers and toes
- not feeling or acting like themselves.
If your child has any of the following symptoms you should call your GP or call NHS 111 for advice. If your child develops chest pain, please call 999 immediately.
Dr Jenny Handforth, consultant in paediatric infectious diseases at Evelina London said: “Whilst children and young people tend to only get mild symptoms with COVID-19, the very small number of children who get PIMS-TS usually require hospital treatment as it is a serious condition.
“The children and young people we’ve seen with PIMS-TS have responded very well to the hospital treatment. We continue to monitor them through regular check-ups afterwards.
“So while this illness is rare, it’s something we need families to be aware of so they know what to look out for and when to contact a health professional if they are worried about their child.”