A boy, his brain, and a decade-long medical debate

In 2014, a story about a patient in Frankovich made the page of a local newspaper. Other doctors diagnosed the little girl with bipolar disorder, but the Stanford team treated her for pancreatitis and she wanted to recover dramatically. Frankovic says the article marked “a very low point in my career and life.” It brought a new wave of criticism, which was bad enough. Worse, Frankovic said, it gave hope to many more patients and families than he and his colleagues were able to treat. “We’re absolutely crushed by phone calls and emails and people just showing up,” he recalls. “It was a nightmare.” But the article was also a turning point: Frankovic soon received support from the hospital’s chief operational officer. He requested a clinic room and a half-time coordinator.

As calls and emails continue to arrive, Francovich’s team will keep an eye on thousands of treatment records, looking for patients with the most obvious cuts in the pancreas. He estimated that they were able to treat one in 10 patients who applied, if that happened. They met with families who sold their cars and refinanced their homes to treat their children. Many said that, like Rita, Frankovich’s clinic was their first hope.

Doctors have been To prove another doctor wrong for millennia. The established credo has been overturned many times, only to be replaced with new information and new beliefs about science and medicine. In the 19th century, perhaps one in five British men who were admitted to a psychiatric hospital was then called a general paralysis of insanity, a crippling condition that ended in confusion of glory, paralysis and death. As written by the poet Kelly Swain The LancetThe Victorians considered it “a disease of extinction and evil”, considering it more moral than biological. We now have a different name for this disease, neurosyphilis and a treatment, penicillin. But in order to transcend this edge of medical science over the decades, people have had to fall into shame without proper treatment.

Many Pans patients and their families feel stuck on the wrong side of the door. “The system is not good for them for other ailments,” said Frankovich. He noted that a child treated for a brain tumor could enter a specialized ward and a team of treatment professionals and social workers. “But when a child has a mental health deterioration and MRI of their brain is normal,” he said, the support network “moves away from them.” Families become so desperate to be treated, Frankovic added, “they can appear very immobile and unruly and they can be very aggressive in trying to get their child’s help.” (Several Pandas skeptics declined to be interviewed for the story, saying they feared online harassment.)

Jonathan Mink, a pediatric neurologist at the University of Rochester Medical Center, blames this strong emotion on the similarity between what families want – an answer, a treatment – and what medical science can provide: “Some people come to me and say, ‘I know you’re in Pandas Not a believer, and I say, ‘It’s not supposed to be a pandas. I believe in the data and the data of Pans and Pandas is incomplete at the moment. He added, “The underlying hypothesis is reasonable, but the data is very mixed. How do we get to things when doctors are uncertain? “

Stanford Schulman, the first critic of Pandas, stressed the need for more advanced information. “Should all older adults take aspirin at once? Because it was a doctrine for a long, long time, ”he said. “But then the study came along New England Journal of Medicine, Very large studies show no benefit and potential side effects, so we need to change our attitude. “If we are proven wrong and really proved wrong, we have to change our own opinion and this is true of all drugs,” he added.

For the past several years, Francovich has been trying to raise money and recruit patients for a comprehensive, long-term study of pans, which will follow 600 children over a long 12-year period. “We need adequate funding to provide the kind of strong evidence that could put an end to the controversy.” “My colleagues have applied for NIH grants for the Pans and Pandas study, and despite their proven success, they have failed to get government funding. So how do we prove that it is real? “

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