Evelina London experts call on families to be aware of symptoms of rare COVID-19 related condition

Lennie and Alfie West were both successfully treated for PIMS-TS at Evelina London

Our large specialist children’s hospital has played an important role over the last year in caring for a small number of children and young people with a rare condition thought to be triggered by COVID-19.

The new condition called Paediatric Multisystem Inflammatory Syndrome (called PIMS-TS or PIMS for short) is very rare and we can detect it early and treat it successfully.

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.”

Advice for parents and carers

As the condition is a delayed reaction to the body trying to overcome the virus, 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.

After Emily West’s 13 year old son Lennie was successfully treated by Evelina London for PIMS-TS in May 2020, she knew what to look out for, and when her son Alfie, 11, developed a high temperature and severe stomach pains in January, she took him to our emergency department as she was concerned he’d developed PIMS-TS.

Emily said: “I didn’t want to seem like I was over-reacting, dragging him straight up to the hospital, but I’m glad I did. After running tests and monitoring Alfie, doctors began to treat him for PIMS-TS. After a few days he was well enough to go home, and the same evening he was back to playing on his computer and talking to his friends.

“The hospital is amazing, what they do is amazing, and they got both of my boys better. Alfie has a few follow up appointments, heart scans and blood tests, and aspirin to take, but I know in a few weeks it will all be done and they both got through it.”

As world-leaders in medical research, we were amongst the first in the world to report PIMS-TS as a new condition in April last year, helping other countries to also successfully treat it. By working with other London hospitals to analyse data during the first peak of the pandemic, we could quickly improve the understanding of the new condition and the best evidence-based treatment. Over the last year we have continued to review evidence and improve treatments, and take part in pioneering research to understand any longer-term impacts.