Building the Case
Many PANDAS experts believe that children should take antibiotics through adolescence and beyond as a precaution. Pohlman, for example, whose son had two IVIG treatments before he showed no further symptoms, plans to keep her son on prophylactic antibiotics until he's 23. But couldn't the daily use of antibiotics cause another problem, drug resistance? Dr. Swedo says no, pointing to research that shows the low doses of penicillin used to help prevent strep infections are not harmful. However, she adds, there are risks from indiscriminate use of long-term antibiotics, particularly the broad-spectrum drugs. And critics of PANDAS do see potential problems with the widespread use of antibiotics and in invasive treatments like IVIG.
Dr. Swedo remains steadfast that there's a connection between strep and pediatric sudden-onset OCD and is encouraged by the work of fellow researchers, including microbiologist Madeleine Cunningham, Ph.D., of The University of Oklahoma Health Sciences Center, in Oklahoma City. Dr. Cunningham has found high levels of antibodies in kids with acute attacks of PANDAS; these levels weren't elevated in those with traditional OCD and tic disorders, supporting the theory that PANDAS operates under its own distinct mechanism.
Meanwhile, roughly two dozen experts around the country treat PANDAS -- including neurologists and infectious-disease specialists -- and the best-known names draw their patients from many states away. But someday, kids might be able to get treated by their own pediatrician.
One such doctor is Susan Schulman, M.D., who's been in private practice for 35 years in Brooklyn, New York. Dr. Schulman was mystified by the high number of early-onset OCD cases in her practice. When she first learned of Dr. Swedo's research linking strep and OCD, "I almost fell off my chair," she says. "There's a very high incidence of strep in my practice. My focus in patients with OCD symptoms became the connection to strep." She came upon a regimen with an antibiotic that has immune-modulating effects; by using it long term, many patients have improved. "Mental illness in a healthy child is terrifying for parents," she says. "But the recent understanding of how early-onset OCD might happen, and what can be done, changes our whole approach to treating it. The challenge now is to educate doctors and mental-health professionals. Many are still skeptical until they see results for themselves."
In the meantime, Kelly Bossman and other parents are hopeful that their children will continue to get better. At press time, Bossman, now three years into her family's journey with PANDAS, was taking her daughter on another all-day car ride to Connecticut, where Karli would receive her second IVIG treatment. Her daughter was "98 percent back to normal" after the first treatment, says Bossman, but the results didn't last. The fact that Karli improved at all, though, is encouraging to Bossman. "Eventually the OCD behaviors will stop coming back," she says. "We are certain that we can get this under control."