A mum was left horrified when her little boy held a knife to his throat and began laughing maniacally after suffering a throat infection.
Alison Maclaine, from Dumfries in Scotland, watched her 10-year-old son Jack go from a sociable, loving kid to a ‘possessed’ child who had worrying outbursts through the night. Jack even developed unusual phobias, including a debilitating fear of stepping in seagull droppings.
It took four months for the psychiatrist to realise Alison’s son had PANDAS, which is a set of conditions that result in inflammation of the brain, in turn causing a number of neuropsychiatric complaints.
Alison and her husband Neil are now sharing Jack’s story in a bid to raise awareness of the rare condition, which is known as paediatric autoimmune neuropsychiatric disorder.
Alison first became concerned for her son’s well-being when he became incredibly anxious back in January 2018.
Jack was a really sociable eight-year-old. He loved playing football, doing gymnastics, martial arts and being with his friends. But in January 2018 that changed overnight.
One Saturday he was due to play in a football tournament, but he became completely overwhelmed by anxiety and couldn’t get himself into the building.
When we got back in the car to go home, he just kept apologising over and over. He was saying, ‘I do not deserve to have friends,’ and, ‘I do not deserve to play football’.
Then that became, ‘I do not deserve to live’. He said, ‘When we get home I’m going to take my clothes off and sit outside until I freeze to death’. We were really shocked as he’d never said anything like it before.
We thought maybe when he’d been out playing that a bigger person had done something awful to him. He kept saying that nothing had happened and he couldn’t explain why he felt like that.
The same night Jack asked his parents why they wouldn’t help him to die, before they found a note from him, which read: ‘I’m really sorry I don’t want to live anymore. I want to be in heaven.’
Horrified, Alison made an appointment with their GP, who made an urgent referral to the child and adolescent mental health services (CAMHS).
He looked like a severely autistic child. He was playing with the toys on the floor and was in his own little world. He did not look like Jack, he looked like a lost little boy. They thought he might have been on the autistic spectrum, but before this there was nothing suggesting that. It was so sudden and made no sense.
In following weeks, Jack developed tics and a stutter, as well as mentally regressing, playing with baby toys and watching programmes he hadn’t enjoyed since being an infant. Jack was even barking like a dog and became highly sensitive to noise and smell.
He was very irritable. We felt like we were walking on eggshells around him. He had really severe mood swings and really isolated himself. He couldn’t cope with people. One of us talking was enough to set him off and he could be extremely aggressive towards me.
There was one moment when he was jumping up and down on my neck laughing this evil laugh and when he spoke it was like it wasn’t his voice. It was as if he was possessed.
During the distressing ordeal, Jack would throw ‘temper tantrums’ at the school gates, and refused to eat anything but pasta and cheese in a separate room on his own.
In a desperate bid for answers, Alison and Neil took him to see a paediatrician in March 2018, where he had an MRI scan and an electroencephalogram (EEG), which is used to find problems related to electrical activity in the brain. However, the results returned as normal, and it was suggested he could have an anxiety disorder.
I know it sounds shocking, but I was hoping the MRI would show something that would explain it. When it came back completely normal I felt strangely disappointed that my child had a normal brain.
I thought Jack would be happy that his brain was normal, but he was completely devastated. He burst into tears and said, ‘This has made me feel worse that there’s no reason. This makes me want to die even more’.
After extensive research, Alison discovered PANDAS, and sought a second opinion from consultant paediatrician Dr Tim Ubhi at the Children’s e-Hospital, an online service providing expert paediatric advice to parents and their children.
During a Skype consultation in May 2018, he diagnosed Jack with PANDAS and advised a treatment plan of antibiotics and ibuprofen, which Jack’s doctor agreed to.
After a few days of taking his antibiotics, Jack began to feel like his old self again. However, two weeks into his prescription, Jack went down to a maintenance dose of antibiotics and started to deteriorate again – talking about running away and becoming homeless.
His mum recalled:
All the thoughts about dying had come back. And then it became harder to get the medication in him, because he didn’t want to get better, he wanted to die.
There was one occasion when he’d just come off them and out of the blue he held a knife to his throat and said he was going to die. We weren’t prepared for it, so his sister saw all this happening, which was awful.
Now we are in this cycle of when he’s on antibiotics he is okay, but when he comes off them he deteriorates again.
Alison remains optimistic, despite not knowing what the future will hold for her son.
There are some studies that suggest children grow out of PANDAS when they reach puberty, because the immune system matures. But there is a lack of research, so we really don’t know. There’s still a long way to go in terms of getting this illness properly recognised.
We take each day as it comes but we do feel hopeful. Jack’s missed out on two years of his childhood, but throughout it he has been really strong and brave. Whatever life throws at him now he will be able to handle it.
Now I am joining forces with the charity PANS PANDAS UK – who have been an amazing source of support and advice to us – to raise awareness of the illness.
If you have a story you want to tell, send it to UNILAD via [email protected]
Emma Rosemurgey is an NCTJ trained Journalist who started her career by producing The Royal Rosemurgey newspaper in 2004, which kept her family up to date with the goings on of her sleepy north east village. She graduated from the University of Central Lancashire in Preston and started her career in regional newspapers before joining Tyla (formerly Pretty 52) in 2017, and progressing onto UNILAD in 2019.