The mysterious syndrome that strikes “like the flick of a switch” and turns children as young as 3 into “psychotic overnight”

UNTIL he was nine years old, Oliver was sociable, popular among his class and head of the school council.

But his behavior underwent a shocking change in January 2020, when he returned from primary school and seemed quieter than usual.

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His worried mother, Megan, checked on him that night and was shocked by the change, saying it was “like a switch had been flipped.”

She said The times: “He was only wearing shorts and was swinging in the middle of the room with a fan, in the middle of winter, with the window open.

“He was crying and saying his skin was hot. He was scared to fall asleep. He became psychotic during the night.”

The names of the parents and children have all been changed for privacy reasons.

The violent change in Oliver baffled medical professionals for an entire 18 months.

The previously sociable, high-achieving student was initially diagnosed with an autistic breakdown and was prescribed antipsychotic medication.

His father, Ben, recalled his son “howling like a wild animal in the back of the car” on one occasion and trying to jump out, all the while shouting, “Let me die, let me die.”

After months of searching for answers, Megan found a charity website PANS PANDAS United Kingdom.

His discovery led to Oliver being diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections – known as PANDAS – in October 2021 by a neurologist at Birmingham Children’s Hospital.

Oliver received a combination of antibiotics, anti-inflammatories and therapy, but he hasn’t left the house in two years – since his last hospital stay.

Now 14, he wears no clothing except a blanket, cannot stand human contact and communicates with his parents from the top of the stairs, The Times reported.

Staff at the school where he is enrolled visit regularly, but they don’t know how to convince him to attend.

After four years, Megan is hopeful that her son will gradually emerge from the mysterious syndrome that struck him so suddenly.

“He’s starting to recover,” she said.

WHAT IS PANDA?

Oliver’s little-known condition is part of a group of syndromes that appear very suddenly and affect the physical and mental health of children and young adults, sometimes developing following common infections such as Covid-19, chickenpox, flu.

PANDAS is specifically triggered by a group A streptococcal infection, which can cause a misdirected immune response and brain inflammation.

Children affected by the disease may be as young as three years old when symptoms first occur, although the syndrome can reach puberty.

Symptoms often appear after a streptococcal infection, such as sinusitis, ear infections or scarlet fever, according to PANS PANDAS UK.

In some cases, children can carry streptococcus bacteria without showing signs of illness.

The acronym PANS – which stands for acute-onset pediatric neuropsychiatric syndrome – is used to refer to the broader condition that can be triggered by other causes.

According to PANS PANDAS UK, there is currently no way of knowing how many children are affected by the syndromes in the UK.

Professor Rajat Gupta, a consultant pediatric neurologist at Birmingham Children’s Hospital who diagnosed Oliver’s condition, said he had diagnosed around 100 children with PANS or PANDAS.

“Children who present this way may have a cause that could be easily treated with a short two-week course of antibiotics,” he said.

But there is little awareness among medical professionals in the UK about the disease.

A PANS PANDAS working group was created in 2022.

Composed of neurologists, immunologists and pediatricians, it aims to improve standards of care for people with PANS and PANDAS and reach a national consensus on how to diagnose and treat the diseases.

The group is also in the process of implementing a UK-wide surveillance study in order to get a clearer picture of how many people these conditions affect.

This would include whether doctors should prescribe antibiotics or anti-inflammatories along with psychiatric help.

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

Ming Lim, a consultant pediatric neurologist at Evelina London Children’s Hospital who is part of the working group, said one of the reasons PANDAS was controversial was because there was no concrete biomarker – such as a brain scan or blood test – to confirm that someone had the condition.

“This is a very peculiar and very recognizable acute-onset neuropsychiatric syndrome,” he said.

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

‘DRAGING YOUR MOTHER AND SCREAMING’

The parents of a 13-year-old schoolgirl also struck by PANDAS have described their daughter’s first subtle symptoms before her rapid deterioration.

Ellie was left with a sore throat, along with several of her friends.

Her parents gave her Calpol and assumed she would get better.

But the once confident and sociable Ellie came home from school in “a full-blown panic attack”, her father Nick recalled, “grabbing her mother and screaming, ‘Make it stop.'”

The teenager was tormented by tormented thoughts and scared to take a knife from the kitchen drawer and plunge it into her chest, The Times reported.

She barely slept, dear, developed a tic of constantly clearing her throat and seemed to regress in age, playing with children’s cars.

Nick found the charity website PANS PANDAS UK and went to a GP with the information, who agreed to prescribe Ellie antibiotics, even though she had never heard of the illness before.

Within three days, Ellie’s symptoms dramatically decreased.

At the same time, blood tests showed she had strep, prompting the same GP to prescribe antibiotics for three months.

Cognitive behavioral therapy helped deal with the residual intrusive thoughts and Ellie has now made a full recovery.

Her parents credit the fast-acting locum GP for Ellie’s speedy recovery.