Surrey mum says teenager's 'whole life is gone' due to rare brain condition

A mum from Epsom says her daughter's "whole life has gone" after developing a neurological condition.

Fleur Senior's mother Helen described her daughter as "outgoing", "very very smart" and "a wonderful leader".

However, having previously suffered from glandular fever, Fleur developed some unusual symptoms after contracting covid-19 back in January 2022.

Helen Senior spoke to Greatest Hits Radio Surrey and East Hampshire in a broadcast exclusive interview.

"Like a light switch one Sunday afternoon, she started with these extraordinary outbursts and physical jerks, and very rapidly became very depressed, with OCD."

"She would throw her head around, she would twitch, she would say the most obscene things in the most extraordinary places."

Fleur is now 17, and having excelled academically, she has now had to leave her school on medical grounds and struggles to read.

"She hasn't taken her GCSEs. She would have got 9's across the board, she was a top scholar and at the moment she can barely read and is almost unable to do any kind of learning."

Fleur has a condition called PANS (Paediatric Acute-onset Neuropsychiatric Syndrome). It is where symptoms such as OCD or restricted eating develop suddenly after an infection. It is often associated with a similar condition called PANDAS, where similar neuropsychiatric issues emerge after a streptococcus infection

"She's seeing the rest of the world move on and she's stuck."

However, Helen explained that it has been a difficult road to getting a diagnosis, and has suggested that it may be down to "a lack of curiosity and open-mindedness in some parts of the health service".

"The testing that she needed to identify what was going on just is not available in the NHS. It was only when a private consultant saw her twitch and said 'I wonder if that's PANS?' and that's what started me on the long journey of discovering what was actually wrong with her.

The NHS has been contacted for comment.

Helen told us that two years into treatment, Fleur is "just beginning to pick up her Maths" and is enjoying small activities like pottery.

"Fleur's got terrific chronic fatigue but she's very conscious of how she is. Her brain just doesn't work very well fundamentally.

"She has not had her teenage years. "She's seeing the rest of the world move on and she's stuck.

"We need to let her brain heal and it will take a long time."

Hear all the latest news from across the UK on the hour, every hour, on Greatest Hits Radio on DAB, smartspeaker, at greatesthitsradio.co.uk, and on the Rayo app.