Doctors are uniting to find a cure for Pandas, a disorder that arrives ‘like the flick of a switch’ and torments children as young as three
Louise Eccles | Sunday May 05 2024, 12.01am BST, The Sunday Times
Oliver spent his 14th birthday last month alone in his bedroom, as he has done for the past four years. He did not unwrap a single present and ate his special birthday food alone in the kitchen, late at night, when he knew his mother and sister would be upstairs.
Until the age of nine, he was a sociable, high-achieving boy who was head of his school council. His Year 5 report described him as a popular member of the class and a dedicated learner.
In January 2020, however, he returned home from primary school unusually quiet and withdrawn. When his mother, Megan, checked on him in his bedroom that night, she said it was “literally like a switch had been flipped”.
“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.”
Oliver still cannot bear any form of human contact, or even face-to-face conversations. He communicates from the top of the staircase. He has not left the house for two years, since his last hospital admission, and wears no clothes except a blanket.
Having baffled medical professionals for 18 months, Oliver was eventually given a diagnosis of paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or Pandas, by a neurologist at Birmingham Children’s Hospital.
Hope of treatment
Pandas specifically refers to children who have developed symptoms after contracting streptococcus, which can manifest as scarlet fever, tonsillitis and other conditions.
The charity Pans Pandas UK believes thousands of children could be affected nationwide, but no official figures are collated. Pans refers to the broader condition that can be triggered by other causes.
Professor Rajat Gupta, the consultant paediatric neurologist at Birmingham Children’s Hospital who diagnosed Oliver’s condition in October 2021, said he had diagnosed Pans or Pandas in approximately 100 children. He called for the medical profession to keep an open mind. “Children presenting like this may have a cause which could be easily treated with a short course of antibiotics of two weeks,” he said.
A working group of neurologists, immunologists and paediatricians has been formed to try to come to a national consensus on how to diagnose and treat Pandas, including whether antibiotics or anti-inflammatory drugs should be prescribed alongside psychiatric help.
Conclusions reached by the group will be presented to the National Institute for Health and Care Excellence (Nice), which advises the NHS on best practice. The group includes representatives from the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing and the Royal College of Occupational Therapists.
‘She was clawing at her mum and screaming’
The parents of a schoolgirl who suffered a sudden mental breakdown in November 2021 credited the quick action of a GP for their daughter’s return to health.
Ellie, 13, had been poorly with a sore throat, like several of her friends, but her parents treated her with Calpol and assumed she had recovered.
Her father, Nick, the director of a design company, said: “She left for school in the morning a confident, well-adjusted girl with a great friendship group, and when she returned from school she was experiencing a full panic attack. She was clawing at her mum and screaming, ‘Make it stop’.
“It emerged she was having intrusive thoughts that she might harm herself. She was scared she was going to go into the kitchen drawer and pick up a knife and plunge it into her chest.”
Over the next few days, Ellie developed a tic where she would clear her throat constantly. “She hardly slept because she was worried she would harm herself,” Nick said. “Her age seemed to regress and she played almost toddler-level games with cars. Her pupils were so dilated they were like Disney eyes.”
Nick found the Pans Pandas UK charity website and read about children taking antibiotics to treat an underlying infection.
“We went to the locum GP and she hadn’t heard of Pandas, but she was open-minded. She said, ‘well, I see no issue with trialling a couple of weeks worth of antibiotics while we set up blood tests and refer you to the local hospital’. Within three days the symptoms went from 100 per cent to 25 per cent.”
After Ellie tested positive for historic streptococcus, the same GP prescribed three months of antibiotics. Cognitive behaviour therapy helped to deal with the residual intrusive thoughts and she has now fully recovered.
Self-teaching at home
Unlike many other mental health conditions, Pandas — a term coined in the United States in 1998 — has been linked to unusual symptoms including urinary issues, dramatic loss of skills such as handwriting and unexpected development of special educational needs.
Oliver’s father, Ben, a financial adviser, said. “I remember him just howling like a wild animal in the back of the car and he tried to jump out. He was screaming, ‘Let me die, let me die’.” He was initially diagnosed with an autistic breakdown and treated with anti-psychotic drugs.
Months later, after his mother stumbled across Pandas while researching his condition and raised it with a psychiatrist, Oliver was referred to a neurologist.
Since then he has been prescribed a combination of antibiotics, anti-inflammatory drugs and therapy. Today, he is enrolled at a school that he has never attended. Megan said staff visited regularly but were “at a loss” about what to do. Oliver teaches himself subjects such as politics and history from his bedroom.
Megan said: “He’s starting to come out of it. He even talks about the fact that it’s going to be over at some point, so I think he’s coming back into the world.”
No concrete signs
Dr Ming Lim, a consultant paediatric neurologist at Evelina London Children’s Hospital, who sits on the new 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. What I don’t know is why [it occurs], biologically. There is some research into brain inflammation going on.”
Fulvio D’Acquisto, professor of immunology at the University of Roehampton, said Pandas may be caused by an overactive immune response leading to the accumulation in the brain of a protein called Immuno-moodulin. He has an antibody in development that he says could block the protein.
A spokesman for Nice said: “As an organisation, we do not have sufficient resources to create evidence-based guidance for all topics in health and care, and an element of selection is therefore required.” NHS England said it welcomed the work that Pans Pandas UK was conducting with professional bodies to advance research.
The names of all children and parents have been changed
‘Let me die’: the mysterious syndrome changing children overnight
Updated: May 10, 2024 by bmanfull@comcast.net
Doctors are uniting to find a cure for Pandas, a disorder that arrives ‘like the flick of a switch’ and torments children as young as three
Louise Eccles | Sunday May 05 2024, 12.01am BST, The Sunday Times
Oliver spent his 14th birthday last month alone in his bedroom, as he has done for the past four years. He did not unwrap a single present and ate his special birthday food alone in the kitchen, late at night, when he knew his mother and sister would be upstairs.
Until the age of nine, he was a sociable, high-achieving boy who was head of his school council. His Year 5 report described him as a popular member of the class and a dedicated learner.
In January 2020, however, he returned home from primary school unusually quiet and withdrawn. When his mother, Megan, checked on him in his bedroom that night, she said it was “literally like a switch had been flipped”.
“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.”
Oliver still cannot bear any form of human contact, or even face-to-face conversations. He communicates from the top of the staircase. He has not left the house for two years, since his last hospital admission, and wears no clothes except a blanket.
Having baffled medical professionals for 18 months, Oliver was eventually given a diagnosis of paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or Pandas, by a neurologist at Birmingham Children’s Hospital.
Hope of treatment
Pandas specifically refers to children who have developed symptoms after contracting streptococcus, which can manifest as scarlet fever, tonsillitis and other conditions.
The charity Pans Pandas UK believes thousands of children could be affected nationwide, but no official figures are collated. Pans refers to the broader condition that can be triggered by other causes.
Professor Rajat Gupta, the consultant paediatric neurologist at Birmingham Children’s Hospital who diagnosed Oliver’s condition in October 2021, said he had diagnosed Pans or Pandas in approximately 100 children. He called for the medical profession to keep an open mind. “Children presenting like this may have a cause which could be easily treated with a short course of antibiotics of two weeks,” he said.
A working group of neurologists, immunologists and paediatricians has been formed to try to come to a national consensus on how to diagnose and treat Pandas, including whether antibiotics or anti-inflammatory drugs should be prescribed alongside psychiatric help.
Conclusions reached by the group will be presented to the National Institute for Health and Care Excellence (Nice), which advises the NHS on best practice. The group includes representatives from the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing and the Royal College of Occupational Therapists.
‘She was clawing at her mum and screaming’
The parents of a schoolgirl who suffered a sudden mental breakdown in November 2021 credited the quick action of a GP for their daughter’s return to health.
Ellie, 13, had been poorly with a sore throat, like several of her friends, but her parents treated her with Calpol and assumed she had recovered.
Her father, Nick, the director of a design company, said: “She left for school in the morning a confident, well-adjusted girl with a great friendship group, and when she returned from school she was experiencing a full panic attack. She was clawing at her mum and screaming, ‘Make it stop’.
“It emerged she was having intrusive thoughts that she might harm herself. She was scared she was going to go into the kitchen drawer and pick up a knife and plunge it into her chest.”
Over the next few days, Ellie developed a tic where she would clear her throat constantly. “She hardly slept because she was worried she would harm herself,” Nick said. “Her age seemed to regress and she played almost toddler-level games with cars. Her pupils were so dilated they were like Disney eyes.”
Nick found the Pans Pandas UK charity website and read about children taking antibiotics to treat an underlying infection.
“We went to the locum GP and she hadn’t heard of Pandas, but she was open-minded. She said, ‘well, I see no issue with trialling a couple of weeks worth of antibiotics while we set up blood tests and refer you to the local hospital’. Within three days the symptoms went from 100 per cent to 25 per cent.”
After Ellie tested positive for historic streptococcus, the same GP prescribed three months of antibiotics. Cognitive behaviour therapy helped to deal with the residual intrusive thoughts and she has now fully recovered.
Self-teaching at home
Unlike many other mental health conditions, Pandas — a term coined in the United States in 1998 — has been linked to unusual symptoms including urinary issues, dramatic loss of skills such as handwriting and unexpected development of special educational needs.
Oliver’s father, Ben, a financial adviser, said. “I remember him just howling like a wild animal in the back of the car and he tried to jump out. He was screaming, ‘Let me die, let me die’.” He was initially diagnosed with an autistic breakdown and treated with anti-psychotic drugs.
Months later, after his mother stumbled across Pandas while researching his condition and raised it with a psychiatrist, Oliver was referred to a neurologist.
Since then he has been prescribed a combination of antibiotics, anti-inflammatory drugs and therapy. Today, he is enrolled at a school that he has never attended. Megan said staff visited regularly but were “at a loss” about what to do. Oliver teaches himself subjects such as politics and history from his bedroom.
Megan said: “He’s starting to come out of it. He even talks about the fact that it’s going to be over at some point, so I think he’s coming back into the world.”
No concrete signs
Dr Ming Lim, a consultant paediatric neurologist at Evelina London Children’s Hospital, who sits on the new 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. What I don’t know is why [it occurs], biologically. There is some research into brain inflammation going on.”
Fulvio D’Acquisto, professor of immunology at the University of Roehampton, said Pandas may be caused by an overactive immune response leading to the accumulation in the brain of a protein called Immuno-moodulin. He has an antibody in development that he says could block the protein.
A spokesman for Nice said: “As an organisation, we do not have sufficient resources to create evidence-based guidance for all topics in health and care, and an element of selection is therefore required.” NHS England said it welcomed the work that Pans Pandas UK was conducting with professional bodies to advance research.
The names of all children and parents have been changed
Category: Newspaper Article, What I'm Reading Now Tags: Birmingham Children’s Hospital, Dr Ming Lim, PANDAS, PANS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, Postinfectious Autoimmune Basal Ganglia Encephalitis, Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, The Times