University of Iowa Stead Family Children’s Hospital has been nationally recognized as an approved NPF Center by the National Pancreas Foundation—one of only 11 official pediatric centers in the country. 

“I’m so excited that this hospital will be nationally recognized. I wanted to yell from the rooftops when I found out, says Shelby Onstot, from Indianola, Iowawhose son Tanner, 8, was treated at UI Stead Family Children’s Hospital for pancreatitis. “I give all of the credit of Tanner’s recovery to Dr. Aliye Uc and her team.”

Tanner Onstot, photoIn 2013 Tanner was diagnosed with acute pancreatitis. His father has pancreatitis, so doctors were able to trace it in Tanner more easily. Doctors at their local hospital had initially diagnosed Tanner with appendicitis.  

“Families need more knowledge, awareness, and support,” Shelby says. “We were able to figure out what was wrong with Tanner when we got the results showing the high lipase and amylase (enzymes found in the pancreas).”

The type of mutation that Tanner has (PRSS1) is a hereditary gene. There are many other mutations that can cause pancreatitis. 

“Our local gastroenterologistswere treating Tanner's pain when a family friend suggested speaking with Dr. Uc at UI Stead Family Children's Hospital. It was Uc who diagnosed Tanner with chronic pancreatitis,” Shelby says. 

Uc determined that removing his pancreas was the best treatment plan for Tanner, and helped his family connect with one of the few centers in the United States that performed this unique surgery. In April 2018, Tanner underwent a total pancreatectomy with islet autotransplant at a hospital in Minnesota.

“He’s in second grade and this will be the first year we will not have to worry about him missing so many days due to pancreatitis,” she says. “Tanner is in the best condition he has ever been.”

About pancreatitis

Pancreatitis is inflammation of the pancreas. A triggering event (for example, trauma, certain viral infections, some medications, ingestion of a toxin, a genetic condition or certain anatomic problems) results in damage to the pancreas. Patients with pancreatitis often have severe abdominal pain, nausea and vomiting. Pancreatitis ranges from mild to life threatening. 

There are three categories of pancreatitis:

  • Acute (the pancreas is injured but returns to normal after a short time)
  • Acute recurrent (there are multiple episodes of acute pancreatitis, but each time the pancreas probably returns to normal; some may lead to chronic pancreatitis)
  • Chronic (pancreas is scarred, acute episodes may still occur)

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About NPF Centers

NPF Centers are awarded after a rigorous audit review to determine that an institution’s focus is on multidisciplinary treatment of pancreatitis, treating the “whole patient” with a focus on the best possible outcomes and an improved quality of life. 

“It’s an honor to be recognized for providing innovative care for children with pancreatitis, says Aliye Uc, MD, division director of pediatric gastroenterology, hepatology, pancreatology, and nutrition at University of Iowa Stead Family Department of Pediatrics. 

An approved NPF Center has to meet the criteria that were developed by a task force made up of invited subject matter experts and patient advocates. The criteria include having expert physician specialties such as gastroenterologists, pancreas surgeons, and interventional radiologists, along with more patient-focused programs such as a pain management service, psychosocial support, and more. 

NPF support helps promote research and education for children and adults diagnosed with pancreatitis, says Uc. Research on pediatric pancreatitis started only about 10 years ago with the launching of the first National Institute of Health-funded pediatric pancreatitis study, INSPPIRE led by Dr. Uc, and the condition is being diagnosed more often now. Dr. Uc wants to host clinical care conferences for providers and discussion sessions with patients to teach professionals, trainees, families, and the public to raise awareness about pancreatitis. She wants develop focus groups involving gastroenterology, surgery, radiology, pain service, and endocrinology.

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