A boy, his brain and decades of medical talk
In 2014, the story of one of Frankovich’s patients turned the pages of a local newspaper. Other doctors diagnosed the girl with bipolar disorder, but the Stanford team treated her with PANS and performed an excellent cure. The article, Frankovich says, “was a very low point in my career and life.” It brought a renewed wave of criticism, bad enough. Even worse, Frankovich says, he gave hope to many more patients and relatives than he and his colleagues could ever care for. “We were completely overwhelmed with phone calls and emails and people were showing up,” he recalled. “It was a nightmare.” But the article was also a turning point: Frankovic soon received an offer of help from the head of hospital operations. He asked for a clinic room and a central coordinator.
As calls and emails came in, Frankovich’s team scanned thousands of medical records in search of patients with the clearest cases of PANS. He estimated that they were able to treat one in 10 patients who made the request. They met families who sold cars and refinanced their homes to pay for their children’s health care. Many said, like Rita, that Frankovich’s clinic was the first place they felt hopeful.
They have been doctors that other doctors have proven wrong for thousands of years. The established creed has often been overturned to replace it with new information and beliefs about science and medicine. XIX. In the twentieth century, perhaps one in five British men admitted to a mental hospital suffered what was then called the general paresis of the insane, a debilitating condition that ended in deception of greatness, paralysis, and death. As the poet Kelley Swain writes Lancet, the Victorians believed it to be a “disease of dissolution and condemnation,” more moral than biological. We now have a different name for the disease, neurosyphilis and treatment, penicillin. But the medical sciences overcame that threshold for decades without letting people suffer ashamed without proper treatment.
Many PANS patients and their families feel stuck on the wrong side of the threshold. “The system is not the same for them as for other diseases,” Frankovich says. He pointed out that a child who is being treated for a brain tumor has access to a specialist room and a team of medical professionals and social workers. “But when a child’s mental health deteriorates and brain magnetic resonance imaging is normal,” he says network support “is moving away from them”. Frankovich added that families are very disappointed in getting treatment, “they can appear very dysfunctional and disorganized and can be very aggressive in trying to get the child’s help.” (Several skeptical PANDAS refused to be interviewed for this story, saying they were afraid of online bullying.)
Jonathan Mink, a pediatric neurologist at the University of Rochester School of Medicine, exacerbates emotions with a mismatch between what families want — the response, the treatment — and what the medical sciences provide. “I know you’re not a believer in PANDAS, and I say,‘ It’s not believing in PANDAS. I believe in data, and right now the PANS and PANDAS data are not conclusive. ” “He adds,” the hypothesis below is reasonable, but the data are very mixed. So how do we deal with medical problems when we are unsure? “
Stanford Shulman, an early critic of PANDAS, also stressed the need for better data. “Should all older adults take an aspirin once a day? That was a long, long dogma, ”he says. “But then came the studies New England Journal of Medicine, a very large study that shows no benefit and potential side effects, so we need to change our minds. “
In recent years, Frankovich has tried to raise money and hire patients for a comprehensive long-term PANS study that will follow 600 children for 12 years. “We need adequate funding to provide strong evidence that can end the debate,” he says. “My colleagues have applied for NIH scholarships to study PANS and PANDAS, and although they have proven their achievements, they have not received any government funding. So how do you provide evidence that this is true?”