PANDAS: A Scary and Controversial Disorder

Could a sudden, severe change in a child's behavior be brought on by something as common as strep throat? Many experts -- and distraught parents -- say yes. We dig deeper to find out what's going on, and which children are at risk.
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When Kelly Bossman's daughter Karli started kindergarten in 2008, there were no signs that anything was amiss. Karli made friends easily and enjoyed being a big sister to her three siblings at the Bossmans' home in Clayton, North Carolina.

Then one morning in November, Karli screamed that she didn't want to go to school. Her underwear, she complained, was too tight. Bossman offered her another pair, but Karli also cried that her shoelaces were too loose, then too snug. Everything, down to the seams of her socks, hurt.

What Bossman figured was an "off" morning quickly became a pattern. Karli threw objects in protest. She hit, kicked, and spit at her parents and siblings. Other upsetting behaviors followed over the next several days: Karli feared traveling in the family's minivan, because she was convinced it would run out of gas. "Some mornings she was tantruming so badly, I couldn't get her into the car," says Bossman. At school, she became withdrawn. She was terrified of making mistakes. Easy homework took more than an hour to complete; she erased her work until the paper tore.

After getting no answers from her pediatrician, Bossman went to another pediatric practice -- then another. Then she consulted a child psychologist, who gave a name to Karli's set of symptoms: obsessive-compulsive disorder (OCD). The average age of children affected by early-onset OCD is 10. Karli was only 5.

Bossman left with a pamphlet about OCD, which said that one possible cause was PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. A relatively new and controversial disorder, PANDAS means that in some children, exposure to Group A strep (the bacteria that cause strep throat) triggers the severe symptoms of OCD.

When Bossman reminded her pediatrician that Karli had had strep throat six months before, he dismissed the possibility of PANDAS, saying it was rare. So she consulted an allergist, a behavior therapist, and a neurologist but couldn't find a doctor who'd treat PANDAS -- or, in some cases, had even heard of it. Bossman faithfully took Karli to cognitive behavioral therapy, but her OCD symptoms didn't improve.

After two years, Bossman found the name of Denis A. Bouboulis, M.D., a board-certified immunologist who specializes in treating PANDAS. But he was in Darien, Connecticut, a ten-hour car ride away. So she did what any desperate mom would do: She made an appointment, got in her car with Karli one morning before dawn, and drove.

Within four days of that meeting and starting treatment on antibiotics, Karli got better. And as the weeks went by, she stayed better. "Ninety percent of her symptoms went away," says Bossman, attributing the success to prolonged courses of antibiotics (one to two months at a time), instead of the standard ten days. Since then, Karli has had recurrences of her OCD symptoms, but Bossman believes her daughter has vastly improved. "I wonder what our lives would be like now if I hadn't read that pamphlet," she says.

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