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The mysterious illness affecting children and young people

a close up of a young boy looking distressed

A concerned mum has spoken publicly about a mysterious illness her teenage son lives with, which took months to diagnose until she stumbled across a particular website.

Chances are you are probably unaware of paediatric autoimmune neuropsychiatric disorder, also known as PANDAS to the few familiar with the condition.

It's now listed on Oliver’s* medical notes, up until January 2020 he was a sociable, popular nine-year-old at school - but all of a sudden he became very reserved.

His mum Megan* said it was "like a switch had been flipped”

She told The Times: “He had stripped down to his shorts and he was just rocking in the middle of the room with a fan on him, in the middle of winter, with the window open.

"He was wailing and saying his skin was hot. He was petrified of falling asleep. He went psychotic overnight.”

The boy’s dad recalled his son "howling like a wild animal in the back of the car" on occasion trying to jump out the vehicle screaming: “Let me die, let me die.”

It wasn’t until Megan stumbled across the PANS PANDAS UK website when she finally found the answers she was looking for.

Oliver, now 14, was finally diagnosed with the condition in October 2021 at Birmingham Children’s Hospital where he was prescribed antibiotics, anti-inflammatory and therapy, but he has been too anxious to leave the house for two years, won’t wear any clothing apart from a blanket and is unable to make any form of human contact.

He only communicates with his parents by speaking to them from the top of the staircase and receives regular visits from the school, who are “at a loss” trying to encourage him back to the classroom.

Little is known about PANDAS at this stage apart from the fact it is a collection of syndromes that can appear overnight affecting the physical and mental health of children and young people triggered by a Group A Streptococcal infection, which can lead to a misdirected immune response and brain inflammation.

In some cases the illness can be found in those with infections such as Covid-19, chicken pox and influenza.

It can also develop after a streptococcal infection, for example sinusitis, ear infections or scarlet fever. 

Professor Rajat Gupta diagnosed Oliver at Birmingham Hospital, he said: “Children presenting like this may have a cause which could be easily treated with a short course of antibiotics of two weeks.”

In 2022 a group of neurologists, immunologists and paediatricians started working together to shed more light on people living with PANDAS, the team are currently in the process of launching a UK study to determine how many individuals are affected with the little known condition.

The team will present their findings to the National Institute for Health and Care Excellence (NICE).

Dr Ming Lim, a consultant paediatric neurologist at Evelina London Children’s Hospital, said: “This is a very peculiar, very recognisable, acute-onset neuropsychiatric syndrome.

"What I don’t know is why [it occurs], biologically. There is some research into brain inflammation going on.”

[ *Names have been changed in this article to protect individual’s privacy. ]

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