A MUM has described the terror she faced on a daily basis after her 11-year-old son grabbed knives in rages and left her with broken bones.
Natasha Lindsay, 45, said her son Cameron, who is now 18, would behave like he was “possessed by the devil”.
Cameron developed a rare brain condition called PANDAS in 2013.
It is often dubbed “exorcist syndrome” because of the sheer impact it has on kids' behaviour.
It was onset by a bout of scarlet fever at the age of 10, as PANDAS is triggered by strep infection, including tonsilitis.
Natasha, of Ballyclare, Northern Ireland, described the condition as being like "an earthquake in Cameron's brain".
She and her daughter Annie, now 16, have been diagnosed with PTSD following the traumatic events that were caused by PANDAS.
Natasha, who runs an artisan bakery company, said: “I crumbled first – being diagnosed with PTSD in 2018. I reached the bottom in January of that year and my body just said, 'I can't do this anymore’.
“Annie was only nine when he took ill and we knew it would come back to haunt her.
“She would help me hide all the dangerous objects and then hide under her bed. It was like she used up all her coping ability in that first year.
“Cameron feels very guilty that he put his family through this – which is the last thing I want.”
But proud mum Natasha says she is “in awe” of what her son has achieved after mostly recovering from PANDAS, apart from an occasional flare up.
Cameron had to relearn how to walk and talk, but remarkably passed four GCSEs and has just started his first job as a customer assistant at Tesco Express.
He said: “With my condition, one of the reasons I let mum do most of the talking for me, is that I can’t remember a lot of what went on when I was really ill."
Years of fear
At age 11, in 2013, Cameron became very anxious and started displaying nervous tics – an early sign of PANDAS.
By February 2014 these had worsened dramatically, and he was rushed to hospital where he was diagnosed with the illness.
The tragic condition happens when body's immune response to strep, a common infection, is misdirected and leads to inflammation in the brain.
Cameron has the most severe form and was thought to be linked to him contracting scarlet fever when he was 10.
He was in and out of hospital for the next four years in a bid to control his symptoms.
A catalogue of alarming symptoms included an acquired brain injury, severe pain in his head, OCD and short-term memory loss similar to dementia.
He would hallucinate and suffer violent rages – giving his mum bruises, black eyes and broken fingers.
After therapies that failed to work, in 2015, Cameron had what his mum described as the “winning treatment” – dialysis-style plasma therapy treatment.
The last-resort treatment invovles reseting the immune system by giving an infusion of somebody else's antibodies to the blood.
It saw Cameron's symptoms diminish to the point where they almost disappeared, apart from a flare-up six weeks later.
He's now 6ft tall and a grown man, so it can be intimidating and slightly scary when he's not good
Natasha, who lives with her two children and husband Jonathan, 47, a Lloyds bank manager, said: “It did enough to put him on the road to recovery.”
By 2018, Cameron started becoming more settled, thanks to a combination of antipsychotic drug risperidone and clonidine, used to treat ADHD and impulsivity.
But the family still had to cope with the fallout of Cameron's condition – which left him initially unable to walk or talk, let alone write, add up or study for exams.
In some severe cases of PANDAS, the condition can lead to cognitive damage.
“Cameron had to relearn everything and he was fiercely determined to,” Natasha said.
“Once we got him the help that he needed, the rest of the family began to process what had happened.
“You're dealing with a daily legacy of a brain injury.
"He gets extreme tiredness, brain fog and fatigue and has executive functioning issues, such as problems with multi-tasking and following a series of instructions.
“He's now 6ft tall and a grown man, so it can be intimidating and slightly scary when he's not good.”
Cameron's symptoms are milder and don’t need hospitalisation, but can still appear threatening.
Lockdowns during the Covid pandemic also presented challenges, with the isolation triggering flare-ups in Cameron’s mood.
But, thankfully, his last “bad flare” was over a year ago – which Natasha is taking as a sign of progress.
What is PANDAS?
PANDAs – or paediatric autoimmune neuropsychiatric disorders associated with strep infections – is a rare condition.
It causes rapid onset of symptoms including:
- drastic mood swings
- panic attacks
- uncontrolled jerky movements
- depression and suicidal thoughts
- moodiness and irritability
- sleep problms
The condition happens when a strep infection causes an autoimmune reaction.
That in turn causes inflammation in part of the brain.
Its prevalence is unknown, but the PANDAS Network believes it could affect one in 200 children.
A child may seem to turn into a different person overnight, becoming moody, anxious and aggressive. It can be scary.
Children with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement.
If children with PANDAS get another strep infection, their symptoms suddenly worsen again.
Treatment tends to be similar to that given to kids with Tourettes syndrome and OCD.
They include cognitive behavioural therapy and drugs to treat OCD, including SSRIs.
Sometimes PANDAS can leave a child unable to function at school or socially. It can worsen without working treatment, leading to cognitive damage.
She said: “That time we had two holes punched in a wall. Luckily, picture frames cover them now!
“Things are nowhere near as bad as that anymore. I am very confident that he won't revert back to how he was – although, you can never say never, as there hasn't been enough research done to be certain.
“People often say how well he's matured, that he's so polite, considerate, lovely to talk to.
“It does the heart good to hear that after all we've been through and all he's endured."
Natasha became head of the Northern Ireland branch of the PANS PANDAS UK charity, which has given her a sense of purpose.
She is brutally honest about the journey ahead for families of PANDAS sufferers, warning: “It's really tough and very lonely.
"Your life is turned upside down and you haven't a clue what's going on. You need to gear up for a fight.
“After we survived this, I don't think there's a lot that’s going to take us down.
“I had no idea where we would end up when this all began.
“Comparing when things weren’t good and we were close to losing him with now, the change is incredible. I’m in awe at what he’s achieved."
Cameron said: “The last year of lockdown was tough for me as you don't realise how much seeing your friends every day makes a difference to your life.
“But I am definitely doing much better than I was years ago and that's something I'm really happy about.”
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