Boy, 8, with 'exorcist' brain disorder that turns into a beggar 'demon' who begs parents to kill him

A young boy changed into a violent, crazed 'demon' after developing a rare brain disorder triggered by mold.

Mum Johanne Hewlett, 43, says her son William 'turned into something out of the Exorcist' and begged his parents to kill him during his disturbing hallucinations.

School matron Johanne and builder husband Jez Hewlett, 53, believe the condition lay dormant before the fever.

The youngster was deemed to be autistic by health professionals and the couple were told to expect parenting classes.

But after a year-long fight, William has now been diagnosed with probable PANS / PANDAS – which is caused when an infection triggers misdirected in the brain.

The condition, which causes neuro-psychiatric conditions such as OCD, tics and eating disorders, can be treated by a two-week course of antibiotics in many cases, according to specialists.

Johanne and Jez are now campaigning to raise awareness of PANS / PANDAS as they may be misdiagnosed with mental illnesses.

Johanne from Winchester, Hampshire, said: "A week after he has developed a fever on September 12 he woke up and was like a demon.

"It was like something out of The Exorcist, he just changed overnight.

"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 he was like he did not register us. He would say 'where's my mum?' It was horrible. He would ask me to get his mum, I thought he did not know who I am.

"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 will not 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 to kill me'. I was thinking 'where is he getting this horrible stuff from?' It was so scary.

"It feels like he's lost his childhood. He can not do things that normal boys do – he used to play guitar, football and go to Beavers.

"Before he had a permanent smile on his face and a great sense of humor, he would give you these big koala bear hugs.

"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 back and that's a lot of parents feel. "

The mum of two said William's behavior started to change in March of 2017 when he developed a phobia of buttons and stopped wearing them.

What started as if he was going to be in a bad place where he would have been able to eat food or if he could not eat it?

The poorly lad would also occasionally wet the bed, it was not eating properly.

Johanne, who is also said to Charlotte, 10, said: "We thought it was very difficult when we were completely normal. We did not see a pattern.

"Then he started saying things like 'Mummy why am I here? I wish I was not alive. I think I'm all confused. My brain is not working properly '.

"It was awful but we had a lot of attention and we were just thinking about it.

"He developed these little tics and would make beatbox kind of noises.

"In October we saw his school report and saw some examples of his work and we could not read his handwriting. It did not make sense as it had been fine before the summer holiday.

"The words were wrong and the math was wrong, I realized it was more than bad behavior.

"He was saying some really deep stuff. We got an appointment with CAMHS and they suggested he needed an autism assessment.

"The advice was we needed to go parenting race. We did a six-week run which was helpful in showing us how to deal with his anxiety.

"We thought our boy was turning into this really naughty, obstructive child. We tried to discipline him with behavior techniques but he got so impossible.

"He started locking us out of the house and throwing things down the stairs. He would be darting around and freak out about something on the floor that was not there.

"It was like someone having control of him or like it was possessed.

"Whatever we say he'd go into a violent rage. He would not get dressed, he would not comply with anything. It was like a fight or instinct and he'd just fight.

"He was very violent – hitting out, kicking, destroying things that were special to him and our wedding presents."

The dramatic change in William's behavior has also had an emotional impact on his sister Charlotte, who struggles to understand the truth.

Johanne said: "His sister Charlotte tries to understand. She's frightened and she gets thinking that he's ruining her life. Often she has to sleep at friend's houses.

"William can not be in a room on his own or his sleep. Why can not we just eat chocolate pillows?

How do you explain to him that you do not back down with William he will break the window?

"He's not brushed his teeth for 10 months. We do not bother anymore because it makes him so distressed.

"He's two years behind at school and is very bright now, he's learning and looks at him as pointless."

Johanne is convinced her son has been triggered by mold in their home while a fever.

The family even had their possessions behind so that William was no longer exposed to the toxins.

His mum claims, William's test results show a high level of mycotoxins, a toxic substance produced by a fungus, in his system and she believes the PANS / PANDA can not be treated until they've rid her little boy's body of them.

Johanne had not heard from PANS / PANDA.

Within 48 hours, the family noted some improvements in William which was a referral to a hospital's immunology department.

After several consultations over 12 months at both private and NHS hospitals, William was probably given a diagnosis of probable PANS / PANDAS.

Johanne said: "We have spent so many pounds doing tests, microscopy reports to identify the mold and therapies. We've seen 12 consultants privately and within the NHS.

"I would say when you factor it all in – the cost of the diagnosis, the extra clothes we have to pick the holes in his clothes – it's cost us in excess of £ 10,000 in a year and we've not even had any treatment. "

Johanne claims the treatment suitable for William now is intravenous immunoglobulin (IVIG) but she is unable to get this in the UK so would have to travel to America and pay tens of thousands of pounds for it.

Despite PANS / PANDAS being recognized by the World Health Organization Johanne is now working to raise awareness of the little-known condition.

Johanne said: "Only 10 per cent of GPs know about PANS / PANDAS. There's a lack of awareness about it in schools.

"Writing and maths are two of the first things to go so you should know to look out for these changes.

"There are so many people in similar situations where they keep trying to diagnose them with autism when PANS / PANDA can be treated if you give them antibiotics.

Some of these children have been treated with anti-psychotic medication, others have been taken away from their parents and put into psychiatric units.

"You just think if the GP would just offer the antibiotics and if it is an infection that will help. If not at least they've tried.

"Children are being referred to CAMHS, which is also for their resources, and maybe it's not bi-polar or a mental illness, maybe it's this."

Johanne said she would not be able to say that it would be better to have a better future.

Vicky Burford, secretary and trustee at the PANS PANDAS UK charity, said: "Children who have been fine before being diagnosed with autism and reported to have their lives frequently altered.

"OCD, tics and eating disorders are the three key symptoms and you need two of those to get a diagnosis.

If these kids present to the GP with these signs and the GP prescribes a two-week course of antibiotics and a referral to a pediatrician for ongoing care then this condition can be cured.

"Unfortunately it is usually seen as a behavior and they are referred to CAMHS who are underfunded and oversubscribed. PANS / PANDAS.

"The main thing is to get doctors to recognize this condition and treat it with antibiotics.

"Often children with PANS will not display normal signs of an infection, such a temperature or sore throat, rather the infection affects the brain instead of the body."

An NHS England spokesperson said: "It is already common practice to treat antibiotics, and it is also recommended that children and young people are offered treatment for any condition, in line with the existing national guidance."

CAMHS declined to comment.