It took the Bossmans years to even get an initial diagnosis. When symptoms first began in 2008, "we kind of waited it out, wondering what it was," said her mother. But things got worse.
In January 2009 thinking it was a behavioral issue, they took Karli to a local psychologist who gave them a book about OCD in adolescents and children.
"She told me to go home and read it and if I thought it was OCD, to call her back," said Kelly Bossman. The book mentioned PANDAS.
"We'd had a long history of strep throats, and as I read the book, I thought, gosh, that's exactly what she has,'" said Bossman.
But none of the doctors -- a behavioral therapist and three pediatricians -- believed that was Karli's problem. "No one had heard of it and no one would listen," she said.
One even put the girl on the anti-psychotic drug Risperdal, and the 6-year-old gained 10 pounds in two weeks. But it helped calm down Karli's outbursts, especially toward her two younger sisters and brother.
"She was so upset, she would hit and kick and throw things," said her mother. "The drugs would make her to where she couldn't get mad and tone her down so you could work with her."
Months passed and eventually Bossman heard an ad on the radio for a study on children with OCD at Duke Medical Center with psychologist Chris Mauro. Karli was accepted and participated from February to June 2010.
"He asked us our medical history and I never mentioned PANDAS," she said. "We'd seen three pediatricians and they done blood tests and said she doesn't have it. We had given up on PANDAS."
Karli's condition waxed and waned, but in August of last year, she began second grade and the "high anxiety" started up again, according to her mother. She went back to Mauro, but this time as a patient.
"It was the first time we had been seen outside the study," she said. "He said he was so happy that now he could tell us what he thought, 'Karli has PANDAS.' Finally, a doctor was telling me I was right."
But Mauro cautions that a PANDAS diagnosis is controversial and treatments are "not a magic cure."
"The immune modulated therapy treatments with antibodies must be done early and young," he said. "And the science isn't clear on the approaches."
"PANDAS is very rare, and my big fear is that everyone who has OCD and a strep infection will think they have it," said Mauro. "The treatment of choice right now is cognitive behavior therapy, especially if you are working with the children and their families."
After finding support and resources online, she located Bouboulis, but had to wait months for an appointment. In the meantime, she found more mothers who had similar frustrations with getting the right diagnoses for their children with PANDAS.
One, Sara Davis Furr of Dunn, N.C., lived only 40 miles away. Her 8-year-old son ripped his clothes off at night because he saw snakes. Antibiotics had helped him, according to a story in the News Observer.
Dunn recommended a pediatrician closer to home who acknowledged the PANDAS and prescribed Keflex, an antibiotic. Karli miraculously got better.
"In 48 hours, 90 percent of the symptoms are gone," said Bossman, but within 10 days the OCD symptoms came back.
By February 2010, Bossman took Karli to her long-awaited appointment with Bouboulis. He did blood work and switched Karli's antibiotics and urged her to have all the three other children's tonsils out, to minimize Karli's exposure to strep.
Karli improved for a while on new medication throughout the summer, but OCD symptoms started up again this year when school opened.
"She's back to not wanting socks and underwear, and her grades are going way down," said Bossman.
Karli has recently started to exhibit signs of depression. "She's crying that she's not good at this and that," said her mother.
When she appealed to immunologists at Duke to offer IV IG treatment, they refused, saying it was still "unproven," she said.
Meanwhile, money has been tight and the monthly trips to Connecticut have been expensive with four children in tow. Karli didn't qualify for free treatment under the NIMH study, because she has had PANDAS for too long.
Bossman said she wants to tell her story to help others. "A lot of kids have it and parents don't know it," she said.
And for those who know, it's hard to find doctors because there are so few with expertise around the country.
"It's a disorder that's, in fact, very difficult to treat," said Bouboulis. "You need an expertise in four areas, neurology, psychiatry, immunology and infectious diseases."
"It's a very difficult entity to get a grasp on and the children and their families require a lot of attention," he said. "There are ups and downs in therapy, and most doctors shy away from getting involved."
But Bossman said she is hopeful that their insurance company with pay for the IV IG treatment and that it will work. "Other parents have seen good success," she said. "We are keeping our fingers crossed."