One day this past winter, a young girl and her mother visited a Boston-area emergency department. The young girl was experiencing severe pain around her stomach. Her mother explained that the girl had been struggling with stomach pains for years, and that, at each visit, her doctors had diagnosed her with constipation. But the severity of the young girl’s symptoms that day led the clinical team to think something else was going on.
The team ordered imaging. When the results came back, they were surprised to find stones and calcifications in the girl’s pancreas. Her pancreas also was extremely inflamed. Years after she started experiencing stomach pain, the girl finally had a diagnosis: acute pancreatitis.
The young girl’s case isn’t unusual. Amit Grover, MD, a gastroenterologist at Boston Children’s Hospital, explains that more and more children are being diagnosed with acute pancreatitis. A simple blood test is all that physicians need to test for the disorder; the presence of elevated pancreatic enzymes in the blood is the telltale sign. But because pancreatitis is typically thought of as an adult problem – often linked with gallstones, cigarette use or alcoholism – many just don’t think to look for it in children.
Normally, the pancreas secretes enzymes directly into the intestines that help digest food. In patients with pancreatitis, however, those enzymes are activated before they leave the pancreas. Because the enzymes are strong enough to break down fat and protein, they begin to break down the pancreas itself, which triggers the activation of yet more enzymes. “It can get really, really bad,” Grover says. “It can lead to fluid in the chest, fluid in the abdomen or blood clots. It can also lead to death.”
Seeking answers and advancing research
Grover, along with Victor Fox, MD, is the co-director of the Boston Children’s Pancreatic Disorders Program, the first of its kind for pediatric patients in New England and one of the first in the country. It is also one of only two pediatric programs in the country to be designated a Center of Excellence by the National Pancreas Foundation (NPF). The designation recognizes the high-quality, multidisciplinary care the program offers, as well as its commitment to advancing research into and awareness of pancreatitis.
It’s not clear what’s driving the growing incidence of acute pancreatitis in children. Some studies suggest that pediatricians are seeing an increasing number of children with complex, systemic disorders who go on to develop pancreatitis as a complication. Another study argues that the number of cases may not be growing, but that an increased awareness of the disorder is prompting more clinicians to test for and therefore catch it in children. Certain medications like immunosuppressants or seizure medications seem to be a risk factor.
And when it comes to treatments for children, answers are even harder to come by. There aren’t many studies of pancreatic disorders in children, and therefore little evidence on which to build standardized treatment protocols.
“Let’s say for example you’re giving IV fluids to help during the recovery process,” Grover says. “What types of IV fluids are the right ones? You’ve ordered them not to eat in order to avoid stimulating the pancreas, but when do you let them eat again? When they get hungry? One day later? Two? The answers just aren’t there.”
In the absence of clear answers, individual healthcare providers have designed their own treatment plan, resulting in inconsistent care from hospital to hospital, and sometimes from physician to physician. As Grover explains, “not a lot of people know how to treat pancreatitis in children, but everyone thinks they know how to treat it.”
Addressing that variability is the second mission of Boston Children’s Pancreatic Disorders Program. Since its launch, it has established standardized protocols and order-sets for patients who arrive at Boston Children’s with a potential diagnosis of pancreatitis.
For Grover, whose interest in pediatric pancreatic disorders stretches back to his years as a resident, the rise of dedicated pediatric pancreas programs across the country is a sign that the pancreas is getting the overdue attention it deserves—and that soon, fewer patients will have to suffer for lack of a proper diagnosis.
Learn more about the Pancreatic Disorders Program.