Alison Maclaine is calling for greater awareness of a condition she believes changed her 8-year-old son overnight.
The mother fears some kids are being misdiagnosed with mental health issues and autism when in fact they are really suffering from an infection that can be easily treated with antibiotics.
Her 8-year-old son Jack suffered difficult personality changes and ‘lost a year of his life.’
She also said that she was left ‘in despair’ that she and her whole family had ‘no quality of life.’
Alison believes Jack was suffering from Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS), which is triggered by a streptococcal infection.
This condition can be simply treated with anti-inflammatories and antibiotics.
In January last year, Jack went to bed excited about a football tournament he was playing in the next day.
However, he became overwhelmed with anxiety when they arrived at the venue. After numerous attempts, he was unable to enter the premises.
Alison realized something was wrong when they got back home. She told the BBC: “He started to repeatedly apologize. He said he didn’t deserve to have fun, didn’t deserve to have friends, didn’t deserve to have nice things, didn’t deserve to play football.
“That eventually led to ‘I don’t deserve to live, when I get home I am just going to sit outside until I freeze to death’.”
During bedtime, the 8-year-old also refused to have pillows and covers and started to say that he needed to die.
The next day, his behavior sank further. “One of the worst things in the world must be listening to your child telling you he wanted to die and asking you to help him,” Alison expressed.
Jack started to become aggressive and he withdrew from his sister Cara. He would become angry and irritable, and chose to play with baby toys.
He was repeatedly diagnosed with autism and severe anxiety over the next few months but Alison, who is a psychiatrist, disagreed.
“It got to the point where I really felt absolute despair,” she said. “I felt that he had no quality of life, we had no quality of life. There were times when I contemplated things.”
That despair allowed her to do her own research and she stumbled upon PANS and PANDAS. The symptoms were like reading a description of her 8-year-old son and his behavioral changes.
Jack was finally diagnosed correctly by a consultant pediatrician in England. He was also treated with simple antibiotics. Alison had her son back after two days.
“Jack responded dramatically to the treatment. He hadn’t left the street in five months except for school. After two days on antibiotics he wanted to come to Morrisons with me and Cara. It felt like Jack was back,” she said.
She added: “It is so frustrating knowing the treatment was so simple. Now I hate to think there are other children in the situation that they have this disorder that has not been picked up on and have been sent down a mental health/psychological route which can’t fix the problem.”
Dr. Tim Ubhi, who diagnosed the boy’s condition, said: “The problem here is if we do not recognize this condition and we ignore it, potentially there are children out there who are suffering who could actually get treated and actually improve their symptoms.
“So we have a responsibility as physicians to think about this as a condition and do the work to actually create an awareness of what the condition is doing in the UK.”
Pediatric acute-onset neuropsychiatric syndrome or PANS is a condition defined by sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other neurological, behavioral or cognitive symptoms.
Other symptoms include depression, anxiety, sensory sensitivities, tics, personality changes, behavioral regression, and a decline in school performance.
Over 80 percent of cases are caused by an abnormal autoimmune or inflammatory response in the brain following an infection. A person is diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) when the infection is known to be strep.
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