In 2014, an article about one of Frankovich’s patients made the pages of a local newspaper. Other doctors had diagnosed the little girl with bipolar disorder, but the Stanford team treated her for PANS and she made a spectacular recovery. The article, says Frankovich, marked “a very low point in my career and in my life.” This sparked a new wave of criticism, which was bad enough. Worse yet, says Frankovich, it gave hope to many more patients and families than she and her colleagues could ever treat. “We’ve been absolutely overwhelmed by phone calls and emails and people just introduce themselves,” she recalls. “It was a nightmare.” But the article also marked a turning point: Frankovich quickly received an offer of support from the hospital’s director of operations. She requested a clinic room and a part-time coordinator.
As calls and emails came in, the Frankovich team sifted through thousands of medical records, looking for patients with the clearest cases of PANS. She estimates that they were able to treat one in 10 patients who applied, if so. They met families who had sold their cars and refinanced their homes to pay for their children’s medical care. Many have said, like Rita, that the Frankovich clinic was the first place they felt hope.
The doctors were proving that other doctors have been wrong for millennia. The established creed has been repeatedly overturned, to be replaced by new information and new beliefs about science and medicine. In the 19th century, perhaps one in five British men admitted to a mental hospital suffered from what was then called general paresis of the insane, a crippling condition that ended in delusions of grandeur, paralysis and death. As the poet Kelley Swain writes in The Lancet, the Victorians considered it as “a disease of dissolution and discredit”, more moral than biological. We now have a different name for the disease, neurosyphilis, and a treatment, penicillin. But in the decades that it has taken medical science to cross that threshold, people have had to suffer shame without proper treatment.
Many PANS patients and their families feel stuck on the wrong side of the threshold. “The system is not there for them the same way it is for other diseases,” Frankovich says. She points out that a child undergoing treatment for a brain tumor has access to a specialized service and to a team of health professionals and social workers. “But when a child presents with deteriorating mental health and their brain MRI is normal,” she says, the support network “pulls away from them.” Families are so desperately in need of treatment, Frankovich adds, that they “can appear very dysfunctional and disorganized, and they can be very aggressive in trying to get help for their child.” (Several PANDAS skeptics declined to be interviewed for this story, saying they feared online harassment.)
Jonathan Mink, a pediatric neurologist at the University of Rochester Medical Center, attributes the heightened emotions to a mismatch between what families want – a response, a treatment – and what medical science is able to provide: “Some people come to me and say, ‘I know you don’t believe in PANDAS, and I say,’ It’s not about believing in PANDAS. I believe in the data, and at the moment the data on PANS and PANDAS is inconclusive. He adds, “The underlying assumption is reasonable, but the data is very mixed. So how do we approach things when we physicians are uncertain? “
Stanford Shulman, the first reviewer of PANDAS, also stressed the need for better data. “Should all seniors take an aspirin once a day?” Because it was dogma for a long, long time, ”he says. “But then studies arose in the New England Journal of Medicine, very large studies showing no benefit and potential side effects, so we need to change our mind. He adds, “If we are wrong, and we are really wrong, then we have to change our minds, and this is true for all drugs.”
In recent years, Frankovich has attempted to raise funds and recruit patients for a comprehensive, long-term study of PANS, which would follow 600 children for 12 years. “We need the right funds to provide the kind of strong evidence that could end the controversy,” she says. “My colleagues applied for NIH grants to study PANS and PANDAS, and despite their proven accomplishments, they were unsuccessful in securing government funding. So how can we provide proof that this is real? “