Infection turned our sweet boy into an Exorcist demon
Agony of parents who can’t find cure for son ‘possessed’ by disorder
AN eight-year-old changed overnight from a happy and loving little boy into a crazed ‘demon’ child after suffering an infection.
A week after developing a fever, William Hewlett suddenly became violent, suffered sinister hallucinations, didn’t recognise his parents and said he wanted to die.
His mother Johanne, 43, described the baffling transformation as like ‘something out of The Exorcist’ and believes it is down to a brain disorder ‘triggered by mould’ at their former home.
Mrs Hewlett and her builder husband Jez, 53, from Winchester, have spent the past year consulting medical experts to try and understand their son’s terrifying change. William has now been diagnosed with probable Paediatric Acute- onset Neuropsychiatric Syndrome (PANS/ PANDAS), which is caused when an infection triggers a misdirected immune response resulting in changes to brain function.
It can usually be cured by antibiotics, but this has not worked in William’s case. Mrs Hewlett, a school matron, said the transformation happened suddenly in September last year.
She said: ‘ He started being really aggressive and violent. He looked different, he looked really pale and his eyes were sunken. He was hallucinating saying there was blood dripping down the curtains. He would look at us and it was like he didn’t register us. He would say, “Where’s my mum?” It was horrible.
‘One of the worst moments was when he sat on my lap and prayed to God for an hour asking God to kill him. He said, “If God won’t do it, will you do it? Will you ask Daddy to do it?”
‘What do you say to that? He’d say, “Push me in front of a bus, send a bus round to kill me”. I was thinking, “Where is he getting this horrible stuff from?” It was so scary.’ Mrs Hewlett said William used to play guitar, football and go to Beavers like other ‘normal boys’ and had a ‘permanent smile on his face.’
‘It feels like he’s lost his childhood,’ Mrs Hewlett added. ‘He’s really bright and clever and you see those bits every now and again. We know he’s still in there. We just want him back.’ William’s behaviour is also frightening his sister Charlotte, ten, who often has to sleep over at friends’ houses.
His parents have spoken out to raise awareness of PANS. The behavioural changes started a few months earlier when he developed a phobia of buttons.
It got so bad he refused to eat food if prepared by someone wearing them.
He wasn’t eating or sleeping properly and began to make worrying comments such as ‘I think I’m all confused’ and ‘my brain isn’t working properly.’ Mrs Hewlett said: ‘He developed these little tics and would make beatbox kind of noises.’
William’s handwriting, which was previously fine, became illegible and his school work deteriorated. His behaviour at home became unbearable, locking his parents out of the house, trashing rooms and throwing things down the stairs.
Mrs Hewlett added: ‘He would dart around and freak out about something on the floor that wasn’t there.
‘It was like someone had control of him or like he was possessed. Whatever we said he’d go into a violent rage.’ William was deemed to be autistic by health professionals and the couple were told to attend parenting classes.
His mother claims tests carried out show a high level of toxins in his system and they left all their possessions when they moved house to stop exposure to anything damaging there.
William was referred to a hospital immunology department and a battery of tests led to the probable PANS/ PANDAS diagnosis.
The family has spent around £10,000 on private health consultations and replacing clothes and items damaged by William. She now believes he needs intravenous immunoglobulin (IVIG) treatment that will cost tens of thou- sands of pounds in the United States. Mrs Hewlett believes many children like her son are being wrongly put into psychiatric units when early treatment with antibiotics could help.
Vicky Burford, secretary and trustee at the PANS PANDAS UK charity, said: ‘The main thing is to get doctors to recognise this condition and treat it with antibiotics. Often children with PANS won’t display normal signs of an infection, such as a temperature or sore throat, rather the infection affects the brain instead of the body.’
‘It’s like someone has taken control of him’