Could it be PANS/PANDAS?

We're hearing the stories of children affected.

We're hearing the stories of children across the country, whose personalities have completely changed - with the cause a rare brain condition...  PANS/PANDAS.

PANS/PANDAS symptoms from PANS PANDAS UK

They are both autoimmune conditions that usually develop suddenly following an illness, like Scarlett Fever for example.

Antibodies created to fight the infection go on to mistakenly attack the brain, leading to symptoms like massive changes in behaviour, including severe OCD.

Harry, whose name we've changed, was a happy nine-year-old boy in Lichfield, getting involved in sports and doing well at school, when he caught Scarlett Fever at the end of 2019.

A couple of months later, he started to develop severe OCD, and started to refuse to eat and drink. He also started writing in his diary that he wanted to die.

Dad Richard - whose named we've also changed, along with his mum initially took him to see his GP, but after his condition got worse, was taken to hospital for two weeks.

"He just seems less happy, less willing to communicate, and his sleeping pattern is all over the place. He's not been able to have a proper sleep for a very long time.

"Everything changed pretty much overnight".

Read the full story at RAYO

SYMPTOMS 

PANS and PANDAS are thought to be autoimmune disorders that occur when the body's immune system mistakenly attacks the brain, leading to inflammation and a wide range of neuropsychiatric symptoms. These symptoms can include sudden onset of obsessive-compulsive disorder (OCD), tics, restricted food intake, developmental regression, anxiety, depression, irritability, and even hallucinations and delusions.

One of the most distinctive features of PANS and PANDAS is that symptoms tend to come on suddenly, often following an infection, such as streptococcal infections, influenza, or chickenpox. Children who previously were healthy and developmentally on track may suddenly start exhibiting signs of OCD or other neuropsychiatric symptoms. ~ 

2024 Royal College of Nursing

More information and support

• in the UK 
• in the US a Pandas Physicians Network.
• in Australia a parents group
• in Europe a Facebook group

If you know of any other organisations or support groups for PANS and PANDAS please let us know in the comments to be included here.