CLAYTON, N.C. -- Karli Bossman's odd behaviors came in a sudden, overwhelming wave.
Karli, then 5, had loved going to kindergarten, but suddenly she began grabbing doorframes and fighting furiously to stay home every morning when her parents tried to take her.
She was afraid to ride in cars because she feared they would run out of gas. She wouldn't go anywhere there was an elevator. She ripped off her shoes and socks no matter how many times her parents put them back on before school.
Karli had been sweet and gentle, but now there were meltdowns.
At first, Kelly and Kevin Bossman thought their oldest daughter was just being a defiant kid. But then it became clear no consequences could persuade her to stop acting on her obsessions.
They took Karli to a doctor. Then a psychologist. Then another. Quickly the list of medical professionals began to mount. The Bossman family had begun what has now become a three-year, 11-doctor, three-psychologist odyssey through the medical system to get Karli's mysterious problem diagnosed and treated.
Finally -- after two years, a host of conflicting diagnoses and a frightening regimen of powerful antipsychotic drugs for Karli -- Chris Mauro, a psychologist at Duke University, diagnosed a children's illness that only recently has been accepted by some members of the medical community: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection, which goes by the acronym PANDAS.
The Bossmans, who had heard of PANDAS but had given up suggesting it as a possibility to skeptical doctors, persuaded a doctor to at least try a course of antibiotics, a basic treatment for PANDAS.
"Within 48 hours we were meeting another kid who we hadn't seen in a long time," Kelly Bossman said. "She was really sweet."
Now the Bossmans have joined a small but growing group of parents of PANDAS kids who trade tips and information about the condition.
Patients who have been diagnosed with PANDAS and doctors who are knowledgeable about it are spread so thinly that it takes the Internet to stitch them together through websites such as the PANDAS Support Network, and the Facebook page for PANDAS parents.
That support is crucial, parents and doctors say, because the condition is as tricky to manage as it is to diagnose.
PANDAS was first identified in the late 1990s. The question of whether it actually existed was controversial; but recent research, including a 2009 study at Columbia University, has bolstered the case for PANDAS, and the National Institute of Mental Health formally recognizes it.
Researchers believe strep infections trigger an immune response that goes awry, causing anxiety, obsessive-compulsive behavior and physical or verbal "tic" symptoms.
Gradually, the number of doctors who have heard of PANDAS is increasing, but those with expertise in treating it are still so rare that lengthy searches for help like the Bossmans' are typical, said Sara Davis Furr. Her 8-year-old son, Gage, was diagnosed with PANDAS after he came home from school one day giving vivid descriptions of snakes that only he could see and leaping awake at night to rip off his clothes.
The symptoms can wax and wane, sometimes apparently in association with a new case of strep or other infections.
The far-flung nature of doctors in the know about PANDAS means even after families finally get the right diagnosis, they may have to travel several states away for help.
Every few weeks, the Bossmans pack up all four of their kids and drive to Darien, Conn., so Karli can see Dr. Denis Bouboulis, an immunologist who is among the nation's top experts in treating PANDAS.
PANDAS is almost certainly under-diagnosed, but its frequency is unclear.
Bouboulis, a member of the board of directors of the PANDAS Support Network, has said as many as 5 percent of all children could have it.
But Dr. John March, chief of child and adolescent psychiatry at Duke University Medical Center and an internationally recognized expert in obsessive-compulsive disorders among children, thinks it's rare.
Of the more than 1,000 children with OCD he has treated, March said only a handful have a sure diagnosis of PANDAS.
"I actually think PANDAS exists, I just don't think it's very common," he said.Still, it's important not to miss a proper diagnosis for PANDAS, he said, because it's important to get the treatment right.
Karli is better, but she isn't cured. Kelly Bossman, frustrated by how few parents and doctors know about PANDAS, has become a kind of evangelist for spreading information about it.
"What I really, really hope to do is ... bring awareness to doctors here. I'd like them to learn a little more about it," she said.
"Also, I've met so many moms online, and seeing what Karli has been through, you just worry about how many kids out there are being given these antipsychotics or no treatment at all, and who really need antibiotics."
(Contact Jay Price at jprice@newsobserver.com.)
(Distributed by Scripps Howard News Service, www.scrippsnews.com.)
Comments