HOLLISTON (CBS) – Just about every kid comes down with strep throat at one time or another, but what many parents don’t realize is that common ailment could trigger a debilitating mental illness.
That’s what happened to 18-year-old Patrick Dillon of Holliston. When he was in elementary school he suddenly developed severe obsessive-compulsive disorder and became paranoid.
“He couldn’t be in the same room with his sisters,” his mother, Heather recalled.
“My sister Susie especially. I wouldn’t go near her. I thought she was like, toxic,” Patrick told WBZ-TV.
Patrick’s behavior was devastating to his parents and five siblings and it seemed to come out of nowhere.
“He completely changed. He was crying a lot, screaming a lot and I would ask him ‘What’s the matter?’ and he would say, ‘I don’t know,’” his father Bill remembered.
Heather and Bill took their son to several different doctors, but none had an answer until they went to see a neurologist who suggested it could be PANDAS or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.
A recent documentary tells the stories of several families whose children suffer from PANDAS. Dramatic video shows violent outbursts and children with verbal ticks and other obsessive compulsive symptoms. Parents described how the diagnosis has thrown their family into chaos.
“Your normal life is suddenly gone, overnight. Your friends don’t understand why,” one mother said. “It was like a completely different kid. It was like looking at a different kid in the same body,” another mom said.
The documentary is called My Kid is Not Crazy, because children are often misdiagnosed.
According to Dr. Kyle Williams of Massachusetts General Hospital for Children, it’s difficult to know when the symptoms are caused by PANDAS and when it’s a mental health disorder. “There is still a lot of controversy about whether or not it exists,” he explained.
But Dr. Williams believes it is real and has treated more than 700 children from around New England. “For a diagnosis of PANDAS, we focus a lot on the sudden onset of symptoms,” he said. A recent strep infection also helps to point to PANDAS.
Treatment can also be controversial. Dr. Williams says he’s had some success with anti-inflammatory drugs similar to ibuprofen and when that doesn’t work, anti-depressants like Prozac.
The Dillons made three trips to Chicago for a treatment called IVIG, an infusion of anti-autoimmune drugs. “He went from being this child who had all these issues to a normal, kind of high-functioning, child again, so it’s amazing how quickly it works,” Bill said.
“Clinically we have had some kids who improve with IVIG,” Dr. Williams said. But there are also kids who do not get better and that’s what makes it tricky, according to Dr. Williams.
Studies have also had conflicting results. One study in the 1990’s determined IVIG was beneficial, while another more recent study found the results were not better than with a placebo.
That uncertainty means a lot of insurance companies won’t pay and it can be a big bill. “The total cost, all in, physicians and treatment was about $25,000,” Bill said.
The Dillons are glad they have the resources to pay, but worry about families who don’t. “It’s horrible when you read the stories, kids on anti-depressants and institutionalized. The answer is right there in front of us,” Bill said.
Parents should keep in mind that most kids who get a strep infection will not develop PANDAS. Dr. Williams believes in a few years doctors will have better diagnostic tools and treatments for the kids who do.
You can find more information at www.pandasnetwork.org.