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One family spent $ 18,000 (£ 10,000) for the desperate purpose of getting a diagnosis for his eight-year-old son who "turned into something of the exorcist" after having developed a brain disorder "triggered by mold". "Data-reactid =" 15 ">
A family spent $ 18,000 for the desperate purpose of getting a diagnosis for their eight-year-old son who "turned into something of the exorcist" after developing a "mold-triggered brain disorder" ".
<p class = "canvas-atom canvas-text Mb (1.0em) Mb (0) – sm Mt (0.8em) – sm" type = "text" content = "Mom Johanne Hewlett, 43, says her son William became a "demon" and became violent and began to hallucinate, even asking his parents to kill him, a week after being hit by a fever in September latest."data-reactid =" 16 ">Mom Johanne Hewlett, 43, says her son William became a "demon" and became violent and began to hallucinate, even asking his parents to kill him, a week after being hit by a fever in September latest.
<p class = "canvas-atom canvas-text Mb (1.0em) Mb (0) – sm Mt (0.8em) – sm" type = "text" content = "The teacher of the school Johanne and her husband, the builder Jez Hewlett, 53, of Winchester in England, I think that state was asleep before the fever and was initially caused by mold on the walls of the three-bedroom house in which they lived previously. "data-reactid =" 17 "> The matron of the school, Johanne, and her husband, Jez Hewlett, 53, of Winchester in England, I think that state was asleep before the fever and was caused by mold on the walls of the three-bedroom house in which they lived.
Health professionals felt that the young man was autistic and the couple was asked to attend parents' training classes.
But after a year-long fight, William has now been diagnosed with probable PANS / PANDAS – which are caused when an infection triggers a poorly directed immune response resulting in inflammation of the brain.
William Hewlett undergoes tests at the hospital, accompanied by Mom Johanne. Source: welcomes
The disease, which causes neuro-psychiatric conditions such as OCD, tics, and eating disorders, can be treated with antibiotic treatment for two weeks in many cases, according to experts.
Johanne and Jez are now campaigning to educate people about PANS / PANDAS because they believe that thousands of children could be misdiagnosed with mental illness.
Hallucinations followed by blood flowing from the curtains
"One week after developing a fever on September 12, he woke up and became a demon," said Johanne.
"It was as if something was coming out of the exorcist, it changed overnight.
"He started to be really aggressive and violent. He looked different, he was really pale and his eyes were sunken.
"He was hallucinating that there was blood flowing on the curtains.
"He was looking at us and it was as if he had not registered us. He said, "Where is my mother?" It was horrible. He asked me to have his mother, I said to myself: "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 to ask him to kill him. He said, "If God will not do it, will you do it?" Do you want to ask Daddy to do it?
"What are you saying to that? He said, "Shoot me in front of a bus, send me a bus to kill me." I wondered, "Where does he find this horrible stuff?" It was so scary.
"It's like he's lost his childhood.
William Hewlett's mother said that before getting sick, he had "a great sense of humor" and a "permanent smile". Source: welcomes
Ms. Hewlett previously stated that he had a permanent smile and a great sense of humor.
"He would give you those big koala bear hugs.
"He's really bright and clever and you see these pieces from time to time. We know he is still here. We just want him to come back and that's what many parents feel. "
Sparkling with a phobia of pimples
The mother of two said that William's behavior began to change in March 2017 when he developed a phobia of pimples and stopped wearing them.
What began as a quirk grew so bad that he vomited if he saw or thought about pimples and that William was even unable to eat food if it had been prepared by a person with pimples.
He also sometimes wet his bed, had trouble sleeping, and in July he did not eat properly – he refused to eat anything except cereals with a chocolate pillow.
Johanne, also Charlotte's 10-year-old mother, said that they thought it was difficult or difficult, and that there had been times when it had become quite normal.
"Then he started saying things like," Mom, why am I here? I would not like to be alive. I think I am confused. My brain is not functioning properly, "she explained.
"In October, we saw his report card and some examples of his work. We could not read his writing. It made no sense because it had gone well before the summer holidays.
"The words were wrong and the maths wrong, I realized while that was more than a bad behavior.
"We had an appointment with CAMHS (Mental Health Services for Children and Adolescents) and they suggested he should have an autism assessment.
"The advice was that we had to take a parenting education course. We took a six-week course that showed us how to handle anxiety.
Johanne Hewlett with her daughter Charlotte and his son William before he gets sick. Source: welcomes
A family tried to move to escape toxins
The radical change in William's behavior also had an emotional impact on his sister Charlotte, who has trouble understanding why her brother is doing so.
"She's scared and she gets a bad idea of why she ruined her life, she often has to sleep with friends," Hewlett said.
The mother is convinced that her son's condition was due to the presence of mold at home, while William had developed a fever that was "the straw that broke the camel's back."
The family even fled their homes leaving all their belongings behind, so that William was no longer exposed to toxins.
His mother says that William's test results show a high level of mycotoxins, a toxic substance produced by a fungus, in his system. She thinks the PANS / PANDA can not be treated until they get rid of her little boy's body.
Johanne had never heard of PANS / PANDA, but after joining some social media groups, she realized that William's symptoms were going well and took her to the doctor for antibiotics.
In less than 48 hours, the family found improvements at William's home that allowed him to be referred to the immunology department of a hospital.
After several consultations during 12 months in private hospitals and NHS hospitals, William finally received a diagnosis of PANS / PANDAS likely.
"We have spent thousands of pounds doing microscopy tests and reports to identify mold and treatments," Hewlett said. "We have seen 12 consultants privately and within the NHS."
"I would say that when you take into account all of that – the cost of the diagnosis, the extra clothes we have to buy because of the way he sews the clothes, it cost us over £ 10,000 in a year and we have not even had any treatment. "
Johanne says that the treatment that suits William is now an intravenous immunoglobulin (IVIg), but she is unable to get it in the UK. She should go to the United States and pay tens of thousands of pounds for it.
The main symptoms of PANS / PANDAS
Although PANS / PANDAS is recognized as a disease by the World Health Organization, Johanne is now working to raise public awareness of this little-known disease.
Johanne stated that she was unable to say what the future would hold for her and whether William would be better off – if, as his immune system developed into adulthood, things would change.
Vicky Burford, secretary and administrator of the PANS PANDAS UK charity, said: "Children who have done well before are diagnosed with autism and are told that they have to live with their symptoms that often change their lives. life.
"OCD, tics and eating disorders are the three main symptoms, and two are needed to get a diagnosis.
"If these children present these signs to the general practitioner and that he prescribes a two-week antibiotic treatment and a referral to a pediatrician for continuing care, this condition can be cured.
"Unfortunately, this is usually considered a behavior problem and it is CAMHS that is underfunded and oversubscribed. There is often a six-month waiting list, and at that point, it is harder to treat PANS / PANDAS.
"The most important thing is to get the doctors to recognize this disease and treat it with antibiotics.
"Often, children with PANS do not have the normal signs of an infection, such as a temperature or sore throat, but the infection affects the brain rather than the body."
A spokeswoman for the NHS England said that it is already common practice to treat any infection with the appropriate antibiotics.
"It is also recommended that children and young people receive treatment for any associated mental health problems, in accordance with existing national guidelines."
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