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Boy's PANS / PANDAS infection diagnosis triggered by mold, UK mum says

A family has spent $ 18,000 (£ 10,000) in a desperate bid to get a diagnosis for their eight-year-old son…

A family has spent $ 18,000 (£ 10,000) in a desperate bid to get a diagnosis for their eight-year-old son who turned into something out of The Exorcist after developing a brain disorder triggered by mold. data-response = “15”>
A family has spent $ 18,000 (£ 10,000) in a desperate bid to get a diagnosis for their eight-year-old son who ‘turned into something out of The Exorcist’ after developing a brain disorder ‘triggered by mold’.

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.0em) Mb (0) – sm Mt (0.8em) – sm” type = “text” content = ” Mum Johanne Hewlett, 43, claims her son William transformed into a demon and became violent and started hallucinating, even asking his parents to kill him a week after he was struck down by a fever in September last year. “data-reactid =” 16 “> Mum Johanne Hewlett, 43, claims her son William transformed into a demon and became violent and started hallucinating, even asking his parents to kill him a week after he was hit by a fever in September last year.

<p class = “canvas-atom canvas text Mb (1.0em) Mb (0) – sm Mt (0.8em) – sm” type = “text” content = “School matron Johanne and builder husband Jez He wlett, 53, from & nbsp; Winchester in England, believes the condition lay dormant before the fever and was initially triggered by mold on the walls of the three-bedroom house they used to live in. ” data-reactive = “17”> School matron Johanne and builder husband Jez Hewlett, 53, from Winchester in England, believe the condition lay dormant before the fever and was initially triggered by mold on the walls of the three -bedroom house they used to live in.

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

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

William Hewlett having tests in hospital, accompanied by mum Johanne. Source: Caters

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 believe thousands of children may be misdiagnosed with mental illnesses.

Hallucinations followed by blood dripping down curtains

“A week after he developed a fever on September 12 He woke up and was like a demon, “Johanne said.

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

“He began to be really aggressive and violent. He looked different, he looked really pale and his eyes were sunk.

“He was hallucinating saying there was blood dripping down the curtains.

” He would look at us and it was like he did not register us. He would say ‘where’s my mum?’ It was horrible. He had to ask me to get his mum, I thought he does 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 round to kill me’.

“It feels like he’s lost his childhood.”

 William Hewlett before he got ill with PANS / PANDAS. Source: Caters

William Hewlett’s mother said before he got sick he had a “great sense of humor” and a “permanent smile”.

“He’d give you this big koala bear hugs. He’s really bright and clever and you’ll see those bits every now and again. We know he’s still in there. We just want him back and that’s how a lot of parents feel. “

Sparked by a phobia of buttons

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 a quirk got worse at the point where he would throw up if he saw or thought about buttons and William even became unable to eat food if it had been prepared by someone wearing buttons.

He ville også tidvis få lov til at sove, ha problemer med å sove og ved juli han var ikke å spise ordentligt – refusing food apart from chocolate pillow cereal.

Johanne, who is also mum to Charlotte, 10, said they thought he was picky or difficult, and then there were periods where he was completely normal.

“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, “she explained.

” In October we saw his school report and saw some examples of his work and we could not read his handwriting.

“The words were wrong and the maths was wrong, I realized that it was more than bad behavior.”

“We got an appointment with CAMHS

“De råd var at vi skulle gå på en forældres kursus. We did a six-week course which was helpful in showing us how to deal with his anxiety.

Johanne Hewlett with daughter Charlotte and son William before he was ill. Source: Caters

Family tried moving house to escape toxins

The dramatic change in William’s behavior has also had an emotional impact on his sister Charlotte, who struggles to understand why her brother acts the way he does.

“She’s frightened and she gets cross thinking that he’s ruining her life, she often has to sleep at friend’s houses, “Ms Hewlett said.

The mother is convinced her son’s condition was triggered by mold in their home while a fever William developed was the ‘straw that broke the camel’s back’.

His family 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 have rid her little boy’s body of them.

Johanne had not heard of PANS / PANDA before but after joining some groups on social media she realized William’s symptoms fitted and took him to the doctors demanding antibiotics.

Within 48 hours the family noticed some improvements in William which was enough to get him a referral to a hospital’s immunology department.

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

“We have spent thousands of pounds having tests, microscopy reports to identify the mold and therapies,” Ms Hewlett said. ” 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 buy because of the way he picks holes in his clothes – i t’s cost us in excess of £ 10,000 in a year and we have 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

The key symptoms of PANS / PANDAS

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

Johanne said she is unable to say what the future holds and whether William will get better – whether as his immune system develops as he enters adulthood things will change.

Vicky Burford, secretary and Trustee at the PANS PANDAS UK charity, said: “Children who have been fine before being diagnosed with autism and told they have to live with their often life altering symptoms.

” OCD, Tics and eating disorders are the three key symptoms and you n

“Als deze kinderen aan de GP met deze tekens en de GP voorschrijven, wordt een twee-weekse cursus van antibiotica en een verwijzing naar een pediatrician voor lopende zorg dan deze voorwaarde kan worden genezen.

“Unfortunately it is usually seen as a behavioral issue and they are referred to CAMHS who are underfunded and oversubscribed. There’s often a six-month waiting list and at that time it’s harder to treat PANS / PANDAS.

“The children are often treated with antibiotics.

It shows normal signs of infection, such as a temperature or sore throat, rather the infection affects the brain instead of the body. “

An NHS England spokeswoman said it is already common practice to treat any infection with the appropriate antibiotics .

“It is also recommended that children and young people are offered treatment for any associated mental health condition, in line with the existing national guidance.”

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