A teenager has been left battling with four-hour long seizures and debilitating uncontrollable outbursts of tears and laughter — caused by a sore throat.
Lee Wilson, 15, was fit and healthy before he got a throat infection in June – and within weeks he was having fits and making involuntary movements and sounds.
It was so out charecter, mum Lisa Bullen, 36, even made Lee promise he had not taken drugs, and doctors tried to have him admitted to a psychiatric unit.
But after two months of countless hospital visits over body twitching and random outbursts he was eventually diagnosed with an unusual condition called PANDAS.
A strep throat infection caused his immune system to attack his body’s healthy cells, leaving him with daily fits and tics – lasting up to FOUR hours each.
Although young people who suffer with PANDAs do tend to make a full recovery, Lisa said Lee’s condition is ruling both of their lives.
Lisa, from Ashford, Kent, now lives every day fearing Lee could break out in violent dystonic seizures at any time.
The condition has left him unable to go out alone or meet up with friends and means he is now almost completely isolated at home.
He is unlikely to return to school in September and will continue receiving care from support workers.
Lisa is speaking out to raise awareness of the rare and largely unknown condition to warn other parents to look out for early signs of symptoms in their own children.
Lisa said: “When it happens it’s like he’s been imprisoned. I’m scared to take him out or let him go anywhere in case it happens in public.
“It comes out of nowhere. His eyes roll back and it’s really shocking to see.
“It’s incredibly disturbing. There’s nothing I can do to help him. He just sits there dribbling and drooling and making these awful noises.
“It’s like he’s been possessed by a ghost or something and to be honest it scares the life out of me.
“I feel awful because when I look at him I don’t feel like I can see my son.
“He’s imprisoned in his own mind. It has turned our life upside down completely.
“He’s a very poorly young man and I’m so worried for his future.
“My son isn’t the person I remember him to be. It is heartbreaking for me.”
Former waitress Lisa said Lee suffered with moods swings, then depression and anxiety, from the age of 13.
It’s a common trait in people who go on to develop PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
But unaware, his mum put it down to ‘teenage tantrums’ and said by the time they went on holiday to Centre Parcs in June, he was feeling much better.
“He was really enjoying himself being on holiday and we were having a lovely time,” she said.
“We were in a good place, but that is the last time I remember my son being normal.”
Three days into the week-long break, Lee came down with a headache, fever, and a sore throat, and they cut the trip short.
After returning home Lisa said Lee started hallucinating and talking to himself, and was given antibiotics to treat the throat infection.
But Lisa said his condition got worse, and he started fitting, dribbling and making odd noises and involuntary movements.
She took Lee to A&E six times in June and July, after his personality “changed” drastically and doctors initially put Lee’s behaviour down to a “psychotic episode”.
He was referred to CAMHS, a mental health support service for young people.
But the tics, twitches and fits continued – with his body stiffening up, leaving him unable to talk, then he started experiencing uncontrollable bouts of laughing and crying.
Lisa said: “When it happens it’s like he’s been imprisoned. I’m scared to take him out or let him so anywhere in case it happens in public.
“It comes out of nowhere. His eyes roll back and it’s really shocking to see.”
Lisa said some of his fits last for up to four hours, and see him swing his head back and forth over and over.
Lee was prescribed diazepam and was offered a place in a psychiatric unit – refused by Lisa who was adamant her son “was not crazy”.
Single mum Lisa, said: “His symptoms just weren’t getting any better at all. The mental health team were visiting us every day.
“I felt like I had to constantly fight to prove my son wasn’t mental.
“I knew he was really, really ill and not crazy.
“I was devastated by it all. My son just wasn’t the same person anymore.”
After a ten-day hospital admission in August, he was given penicillin and was assessed by neurologists and psychiatrists, who finally diagnosed him with PANDAs.
PANDA develops when an infection causes the immune system to attack the body’s healthy cells, in this case, cells in the brain.
The strep bacteria disguise themselves to look like normal cells and when the immune system tries to fight them, it sometimes also fights the cells that the strep is imitating.
This damages the cells, causing the auto-immune disorder.
Lisa said she has had to give up her job as a waitress to care for Lee and has even had to sleep on his bedroom floor at times, out of fear he might start fitting during the night.
Although young people who suffer with PANDAs do tend to make a full recovery, Lisa said Lee’s condition is ruling both of their lives.
The next steps for Lee are to be seen by specialist neurologists at the Evelina Children’s Hospital in London.
“Our whole life has been turned upside down and it is a living nightmare,” said Lisa.
“I have no idea when he will get better or if he’ll be able to go to school or not in September.”
ENDS