Mother whose son, 18, had ‘exorcist syndrome’ caused by scarlet fever when he was 10 reveals he’s left her with bruises, black eyes and broken fingers after violent rages and threatened his family with knives
- Cameron Lindsay caught a Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections at the age of 11
- The condition caused him to grab knives, hallucinate and suffer violent rages
- His mother Natasha Lindsay, 45, was diagnosed with post-traumatic stress disorder (PTSD) as a result of dealing with her son’s illness
A roud mother whose son was struck down by ‘exorcist syndrome,’ causing violent episodes in which he threatened his family with knives, has praised the teenager for ‘fighting back’ and landing his first job.
Cameron Lindsay, now 18, from Ballyclare, Northern Ireland, developed a rare and terrifying neurological condition known as PANDAS in 2013, as a result of an infection, that saw him hallucinate and suffer violent rages – giving his mum bruises, black eyes and broken fingers.
His mother Natasha Lindsay, 45, describes paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), as being like ‘an earthquake in Cameron’s brain,’ attacking his body and mind and making him behave as if he was ‘possessed by the devil.’
But, after plasma therapy treatment, anti-psychotic medication and psychological support, Cameron, has relearned how to walk and talk—also, remarkably, passing four GCSEs and starting his first job as a customer assistant at Tesco Express.
Cameron going for his first job interview in 2019. He now works as a cashier for Tesco Express
Cameron, pictured in hospital having tests, experienced symptoms caused terrifying behavioural changes but he started becoming more settled, thanks to a combination of antipsychotic drug risperidone and clonidine, used to treat ADHD and impulsivity
Natasha, who runs an artisan bakery company and lives with Cameron, husband Jonathan, 47, a Lloyds bank manager, and daughter Annie, 16, said: ‘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.
‘He’s so doggedly determined to make a life for himself and be a normal young lad – and he’s certainly achieving that.’
Natasha, who is head of the Northern Ireland branch of the PANS PANDAS UK charity, was even diagnosed with post-traumatic stress disorder (PTSD) as a result of dealing with her son’s illness.
Cameron’s mum Natasha recalls nights where they feared losing him when he spent four years in and out of hospital
Cameron enjoying time with his parents and sister, Annie, before he got ill. His symptoms now include ‘extreme tiredness, brain fog and fatigue and has executive functioning issues, such as problems with multi-tasking and following a series of instructions’
Cameron Lindsay (above) was only 11 when he started to suffer from PANDAS, a condition that would later cause him to attack his own family
Just 11 when the terrifying condition first struck in 2013, Cameron became very anxious and displayed nervous tics.
By February 2014 these had worsened dramatically, and he was rushed to his local hospital, before being transferred to the Royal Victoria Children’s Hospital in Belfast and diagnosed with PANDAS.
Caused by the body trying to fight a strep infection, PANDAS also destroys brain cells of a similar make-up. Cameron has the most severe form, dubbed ‘exorcist syndrome,’ because of the behaviour it triggers.
In and out of hospital for the next four years in a bid to control his symptoms, Cameron’s illness was thought to be linked to him contracting scarlet fever when he was 10.
Given four lots of intravenous immunoglobulin – antibodies pumped directly into his bloodstream – still the condition persisted and, any time he caught a bug, he would have flare-ups, bringing normal life for him and his family to an abrupt halt.
Cameron was given four lots of intravenous immunoglobulin – antibodies pumped directly into his bloodstream, as well as plasma therapy
A catalogue of alarming symptoms included an acquired brain injury, severe pain in his head, obsessive-compulsive disorder and short-term memory loss similar to dementia – and he had to be restrained from grabbing knives from the kitchen drawer to harm himself or his family.
In 2015, dialysis-style plasma therapy treatment saw his symptoms diminish to the point where they almost disappeared.
And, despite the flare-ups returning six weeks later, Natasha says this was the ‘winning treatment,’ adding: ‘We were extremely fortunate to get him this.
‘The antibodies attacking his brain live in plasma. It did enough to put him on the road to recovery.’
Cameron in 2020 with his cat, who helps him with his symptoms
Thankfully, by 2018, Cameron started becoming more settled, thanks to a combination of antipsychotic drug risperidone and clonidine, used to treat ADHD and impulsivity.
Natasha said: ‘Around two and a half years ago, family life was starting to return. He got into a routine and was thriving with amazing home teachers.’
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.
‘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.
‘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”. And her daughter, Annie, was hugely impacted by her brother’s condition, also suffering from PTSD as a result of childhood trauma.
Natasha said: ‘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.’
Now an adult, his symptoms are milder and his flare-ups, which are less severe and less frequent, no longer require hospitalisation, although his mood and reactions can still appear threatening.
Natasha said: ‘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.’
Ballyclare High Grammar has supported Lindsay in the years since his diagnosis, although he was never able to return to the classroom fully
But Cameron is able to take more responsibility for his own treatment.
‘The difference with parenting him now is that he recognises his symptoms and knows when his meds aren’t working,’ said Natasha.
‘The key for me is being soft and gentle – exactly the same as I was at the start.’
Lockdown presented challenges, with the isolation triggering flare-ups in Cameron’s mood. Natasha said: ‘It was difficult for him to cope. Being hemmed in and not seeing friends was hard.
‘We had a really bad time at the start, but millions of people were in the same boat. I can’t imagine what it was like for parents of younger children with this condition, with all the support stopped.
‘For us, life still revolves around Cameron, and as he starts to go into the adult world, he’ll need even more support.’ But, thankfully, his last ‘bad flare’ was over a year ago – which Natasha is taking as a sign of progress.
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.’
And she praised Cameron’s school Ballyclare High Grammar School for all their support in the years since his diagnosis. Although he was never able to return to the classroom fully, in summer 2020 he completed GCSEs in maths, English, physics and business studies, achieving two As in maths and English and two Bs in physics and business studies.
People often say how well he’s matured, that he’s so polite, considerate, lovely to talk to
He also remains very close to the group of six friends he attended primary school with – and enjoys socialising and playing golf when he’s not working. ‘It’s so lovely and encouraging to see him making his way in the world,’ Natasha said.
‘He’s revelling in the fact they can now go out and do things together – he’s making up for the time he’s lost.’
Ever the proud mum, she is overjoyed when friends describe her son as a ‘lovely young man.’
‘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.
‘We’ve come out the other side – most definitely bearing scars – but family life has come back.’
Cameron’s whole family have felt the burden of the cruel condition but Natasha states, ‘We’ve come out the other side—most definitely bearing scars—but family life has come back’
Natasha’s charity work, with PANS PANDAS UK, which was founded in October 2017, has also given her a sense of purpose and she sits on the UK executive committee, as well as running the NI branch.
WHAT IS PANDAS?
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections ( or ‘PANDAS’) an autoimmune response to a streptococcal infection
It is a fairly recently described disorder, having only been recognised since the 1990s.
It is diagnosed if there is a history of abrupt development of a number of neuropsychiatric symptoms – for instance, shouting and screaming. This must be associated with a group A streptococcal infection: the type of bacteria causing strep throat.
Medication and cognitive behavioral therapy (CBT) are the primary treatments for PANDAS.
‘We just got officially recognised by The Charity Commission – so it’s full steam ahead,’ she said.
Plans include hosting families for respite stays, supporting parents with newly diagnosed children, offering care hampers and income top-ups and working with the NHS and MPs to improve support.
‘It was very important to us that something positive comes out of this,’ Natasha added. ‘We don’t want to have gone through it all for nothing.’
Natasha remains brutally honest about the journey ahead for families of PANDAS sufferers.
‘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. ‘You feel like you’re on your own and don’t know how to get up each day, but you need to be really determined and do everything you can to get your child the help they need – they rely on you.
‘After we survived this, I don’t think there’s a lot that’s going to take us down.’
While Cameron is not completely free from the chaos PANDAS wreaked on his life, he is far, far better.
Speaking of the condition Cameron said, ‘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.’
‘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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