'My son was violent, aggressive, a danger to himself'

Lucas was a happy and sociable child who was thriving in school when he developed scarlet fever in 2025. Just a few weeks later he was anxious and violent and he was having suicidal thoughts.

Now aged 10, Lucas has been housebound for the past six months because he is too scared to leave the safety of his Bristol home.

His family did not know it in 2025 but Lucas had developed Paediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), a little-known condition which can cause severe psychological symptoms in children.

Researchers believe PANDAS is the result of a faulty immune response to a streptococcal infection and it can lead to anxiety and OCD as well as physical and vocal tics and aggression.

The condition had been triggered in Lucas by the scarlet fever infection.

"The situation was dire," said his mum Laura Sharp. "He changed in the space of a few weeks.

"My son was out of school. He was violent, he was aggressive, he was a danger to himself. We didn't know what to do."

The situation was made worse because Lucas's GP failed to diagnose the condition and the family spent thousands of pounds seeing a private paediatric neurologist.

Sharp said her son had had "suicidal ideation" in the past year - something which many other children with the condition had also experienced.

Lucas has been referred to a specialist at Bristol Children's Hospital but Sharp said the toll on the family had been "horrific".

PANS PANDAS UK - which also supports children with the sister condition Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) - acknowledged that there was "very poor" awareness among grassroots medical professionals, although there was now support in the higher echelons of NHS England.

CEO of the charity Vicky Burford said clinical guidelines were in the process of being drawn up by the Royal College of Paediatrics and other organisations and they were due to be published within the next six months.

NHS England said that although there was currently no agreed medical definition of the conditions, or how best to treat them, the national steering group was working to help clinicians better understand PANS PANDAS and to support affected children and their families.

Eleven-year-old Frank was also a happy and sociable boy who changed radically within weeks of contracting an infection, becoming anxious and violent.

His mother, Minnie Coxwell-Crosse, said her son's behaviour after the illness in 2025 was so extreme that he had to be taken out of school.

Coxwell-Crosse, from Clevedon in North Somerset, said the situation was made worse because Frank's GP had never heard of the condition and the family ended up paying a private specialist to get a diagnosis.

Frank has finally been referred to a paediatric neurologist at Bristol Children's Hospital but Coxwell-Crosse said more needed to be done to educate clinicians about the condition.

'Broken and lost'

Coxwell-Crosse said she felt like she had "lost her child" to a condition that so little was known about.

"He would be hiding under a table, quaking and shivering or having to be manhandled by his teachers out of the playground because he was trying to escape from the school gates," she said.

"I miss Frank's vivacious happiness. I don't want a child that is so broken and lost - it's just devastating.

"The really cruel thing about this disease is that it's invisible to the medical profession," she said.

In a diary entry following diagnosis, Frank wrote: "Since PANDAS started I've lost the real Frank. I feel like I don't have any friends and my family stopped loving me."

Coxwell-Crosse said she was in the process of "fighting" for a specialist school place for Frank, who has now been out of the classroom for more than a year, something which has "resulted in his dark thoughts and suicide ideation coming back", she said.

According to PANS PANDAS UK, the number of sufferers of the condition is unknown, although figures from the USA suggest the condition may affect one in 200 children.

It can be difficult to diagnose because it shares many symptoms with other conditions such as OCD and ADHD.

However, the key word is "sudden" because conditions like ADHD do not occur overnight.

'Told it doesn't exist'

Gemma, from Bristol, said her 11-year-old son also changed suddenly after contracting a streptococcal infection four years ago.

"He had frequent urination, huge anxiety, OCD and a tic," she said.

"We had this child who was totally healthy, happy, sociable, with 100% attendance in school, to overnight completely changing and very violent at home.

"I'd researched PANDAS and went to the doctor but was very much told by the GP that it doesn't exist," she said.

Parents said they felt "frustration" about the lack of awareness of the condition and they wanted more to be done to prevent other parents going through a similar experience to them.

Burford said NHS England acknowledged the condition and supported the charity's work.

"However, that isn't being reflected on the ground with GPs, paediatricians and tertiary consultants," she said.

"You would expect a GP who saw a child with psychiatric symptoms to refer them to CAMHS [Child and Adolescent Mental Health Services] and go down the mental health route.

"But with PANS or PANDAS you need psychological support, but you also need other medications to help the body heal."