UNTIL the age of nine, Oliver was sociable, popular with his class and head of his school council.
But his behaviour underwent a shocking change in January 2020, when he came home from primary school and seemed quieter than usual.
His concerned mum Megan checked on him that night and was shocked at the shift, saying 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 names of parents and children have all been changed for privacy reasons.
The violent change in Oliver baffled medical professionals for a full 18 months.
The previously sociable and high achieving pupil was initially diagnosed with an autistic breakdown and prescribed anti-psychotic drugs.
His dad Ben recalled his son “howling like a wild animal in the back of the car” in one instance and trying to jump out, all the while screaming: “Let me die, let me die.”
After months of searching for answers, Megan stumbled across a website for the charity PANS PANDAS UK.
Her discovery lead to Oliver being diagnosed with paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections – known as PANDAS – in October 2021 by a neurologist at Birmingham Children’s Hospital.
Oliver was prescribed a combination of antibiotics, anti-inflammatory drugs and therapy, but he hasn’t left the house for two years – since his last hospital admission.
Now 14, he won’t wear any kind of clothing except a blanket, can’t bear human contact and communicates with his parents from the top of the staircase, The Times reported.
Staff from the school he’s enrolled in have visited regularly but are “at a loss” about how to get him to attend.
After four years, Megan is hopeful that he son will gradually emerge from the mysterious syndrome that struck him so suddenly.
“He’s starting to come out of it,” she said.
WHAT IS PANDAS?
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 in the wake of common infections like Covid-19, chicken pox, influenza.
PANDAS specifically is triggered by a Group A Streptococcal infection, which can cause a misdirected immune response and brain inflammation.
Children affected by the condition can be as young as three when first symptoms occur, though the syndrome can strike up to puberty.
Symptoms usually appear following a streptococcal infection such as sinusitis, ear infections or scarlet fever, according to PANS PANDAS UK.
In some cases, children can carry the streptococcus bacteria without showing signs of illness.
The acronym PANS – which stands for paediatric acute-onset neuropsychiatric syndrome – is used to refer to the to the broader condition that can be triggered by other causes.
According to PANS PANDAS UK, there’s currently no way of knowing just how many children are affected by the syndromes in the UK.
Professor Rajat Gupta, the consultant paediatric neurologist at Birmingham Children’s Hospital who diagnosed Oliver’s condition in, said he had diagnosed about 100 children with PANS or PANDAS.
“Children presenting like this may have a cause which could be easily treated with a short course of antibiotics of two weeks,” he said.
But there’s little awareness among medical professionals in the UK about the condition.
A PANS PANDAS working group was established in 2022.
Comprised of neurologists, immunologists and paediatricians, 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 conditions.
The group is also in the process of rolling out a UK-wide surveillance study in order to get a clearer picture of how many people these conditions affect.
The signs and symptoms of PANS and PANDAS
PANS (paediatric acute-onset neuropsychiatric syndrome) is a neuropsychiatric condition caused by a misdirected immune response to an unknown trigger, which sets off to inflammation in the brain and leads to both physical and psychiatric symptoms.
Despite its name, PANS can affect any individual at any age.
There is currently no specific test which will prove or disprove the condition and a diagnoses are made based on a patient’s medical history, a review of their current symptoms and a physical examination.
PANDAS is (paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections) a subset of PANS.
It’s a neuropsychiatric condition which is triggered by a misdirected immune response to a Group A Streptococcal (GAS) infection.
Symptoms can appear whilst the infection is still present or several months later.
PANDAS usually starts with an acute onset of obsessive-compulsive disorder and/or tics.
Symptoms can come and go and children may experience flares following illness or periods of stress.
Those affected are usually between the ages of three and puberty when first symptoms occur.
They usually appear following a streptococcal infection such as sinusitis, ear infections or scarlet fever.
Source: PANS PANDAS UK
This would include whether clinicians should prescribe antibiotics or anti-inflammatory drugs along with psychiatric help.
The group will present its conclusions to the to the National Institute for Health and Care Excellence (NICE).
Dr Ming Lim, a consultant paediatric neurologist at Evelina London Children’s Hospital, who’s 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 someone had the condition.
“This is a very peculiar, very recognisable, acute-onset neuropsychiatric syndrome,” he said.
“What I don’t know is why [it occurs], biologically. There is some research into brain inflammation going on.”
‘CLAWING AT HER MUM AND SCREAMING’
The parents of 13-year-old schoolgirl also struck by PANDAS described their daughter’s subtle first symptoms before her rapid deterioration.
Ellie came down with a sore throat, along with several of her friends.
Her parents gave her Calpol and assumed she’d get better.
But the once confident and sociable Ellie returned from school in “a full panic attack”, her dad Nick recalled, “clawing at her mum and screaming, ‘Make it stop'”.
The teen was tormented by tormented thoughts and scared she’d take a knife from the kitchen drawer and plunge it into her chest, The Times reported.
She hardly slept out of dear, developed a tick of clearing her throat constantly and seemed to regress in age, playing toddler-level games with cars.
Nick found the PANS PANDAS UK charity website and went to a GP with the information, who agreed to prescribe Ellie a course of antibiotics even though she hadn’t heard of the condition before.
Within three days, Ellie’s symptoms had lessen drastically.
At the same time, blood tests showed she had streptococcus, leading the same GP to prescribe three months of antibiotics.
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Cognitive behaviour therapy helped to deal with the residual intrusive thoughts and Ellie has now fully recovered.
Her parents credit the fast-acting locum GP with Ellie’s swift recovery.