The story of a father, a daughter, and a fever

By the time Robbie Stankard was 14 months old, he had been to the emergency room 19 times. Every time the symptom was the same, a fever of 103.8.

The doctors ran tests, scary tests, looking for things like leukemia, things that would make Robbie's mother, Marcia, throw up with worry. The tests were always negative, but the fevers persisted like clockwork, every third Monday.

The Stankard's story ended happily, thanks to coincidence, serendipity, and a doctor willing to take a risk with his own daughter.

The coincidence is that the Stankards live in Westwood, the same town as Greg Licameli, a doctor at Children's Hospital Boston. The serendipity is that Marcia Stankard had heard through the grapevine that Licameli's daughter, Claire, had had the same problem, the same cyclical fevers. And Licameli had figured out how to beat it: removing the child's seemingly healthy tonsils and adenoids.

It's still unclear why a tonsillectomy should cure children of unexplained, recurring fevers. But in the five years since he removed his daughter's tonsils, Licameli, an otolaryngologist, has seen 60 patients suffering from this cyclical fever syndrome, known as PFAFA, and the findings continue to hold up. Robbie Stankard, who is about to turn 6, is one of those successes. In February, Licameli published a paper on 27 of his earliest patients. After having the surgery, 26 of those people remain fever-free.

Now Licameli is hoping to get his findings out to the general public. PFAFA was first described in 1987, but has remained, in Licameli's view, "as low-level background noise," without enough cases to raise it to the surface and make the average doctor aware of the condition.

When his daughter came down with the fevers around her first birthday, Licameli reacted as both a doctor and a father.

"Why is this happening?" he asked himself. "It was frustrating as a parent and as a physician to see your child having an issue and you can't fix it," he said.

They went through the tests, the blood workups, the specialists, each time coming up empty. So Licameli dipped into the medical literature, finding a couple of European studies that pointed toward removing the tonsils and adenoids as a cure.

Licameli's daughter had two seizures as a result of the fevers. Traditional remedies failed to bring her fever down, so she had to be packed in ice. Her development was being affected, he felt, because she was getting knocked down for five days at a time. At the same time, all surgeries come with risk. And there was evidence that many children grow out of the fevers by the time they're 7 or 8. He thought about it, decided he didn't want to put his daughter through the up-and-down for years to come, and went for it.

She turns 6 tomorrow. She's healthy.

The Prendergast family does not live in Westwood. They live in Sterling. Their daughter, Sophia, now 2 1/2, came down with the cyclical fevers when she was 6 months old. But they also had coincidence on their side because they happened to see a pediatrician who had experience with a PFAFA patient, which is uncommon. And the pediatrician knew of Licameli's success.

Because Sophia was so young, the Prendergasts first opted for a steroid treatment, which can help lessen the severity of the fevers but increases their frequency, according to Licameli. In November, she went in for the tonsillectomy on the day she was due for another fever. It never came.

"We used to hope that she would grow out of them," said Melissa Prendergast. "Now, we're just so thankful for Dr. Licameli and Children's Hospital. This whole procedure changed our lives. We're thankful that what she had was a safe, benign thing, but it was agonizing for a parent. She's always been such a happy child, and then every three weeks she would get very sick, she wouldn't eat. And you knew it was coming."

With the publication of the study, which appeared in the "Archives of Otolaryngology and Head and Neck Surgery," Licameli is hoping to remove coincidence, serendipity, and proximity to Children's Hospital from the equation.

"The goal is to make people aware," Licameli said. "We're treating. We're getting a cure. Intellectually, we don't know why. But there's infinitely more that we don't know about medicine than we do."

"And nobody has asked me to put their tonsils back in."