Pancreas Care

Patient Stories | Alex and EPI

Managing Pancreas Condition & Gaining Weight, Alex Excited for College

Teen Success Story Made Possible by Pancreas Care Center

When she first arrived at Cincinnati Children’s, Alexandra Rapp was languishing in the bottom second percentile for weight.

Alex, who was 12 at the time, had struggled for years to put on the necessary pounds to maintain a healthy body.

The cause was unknown. Her parents, Jacqueline and Keith, felt helpless as they watched their middle school daughter dwindle to 61 pounds. They worried Alex might be slipping away.

“She was so malnourished,” said Jacqui, thinking back to the early days with near disbelief. “She was losing a lot of weight. And she was sleeping a lot. She was exhausted all the time, going to sleep at 5 o’clock.”

Several tests were performed by the family’s gastroenterologist near their home in Louisville, Ky. Preliminary results showed that her pancreas had suddenly stopped working and was no longer producing the enzymes needed to properly digest food and fat.  

“That’s when we realized that things were not good. She had 86 percent fat in her stool and we were told it’s supposed to be 3 or less,” said Jacqui.

Thanks to a family friend’s recommendation, as well as extensive online research, the Rapp family discovered the team of experts at Cincinnati Children’s Pancreas Care Center.

“I had become connected with the National Pancreas Foundation online,” said Jacqui. “I asked where we should go. The answer was clear: ‘You want to see Dr. Haija.’ ”

A pancreatic stimulation test was done in March 2015 and soon afterward Alex began seeing Maisam A. Abu-El-Haija, MD, medical director of the Pancreas Care Center.

“It all happened very quickly after that,” said Jacqui.

Alex was diagnosed with exocrine pancreatic insufficiency (EPI) and efforts to reverse her malnutrition and increase her weight began in earnest.

What is Exocrine Pancreatic Insufficiency (EPI)?

EPI is a result of the pancreas not making enough of the enzymes that help break down food. The other important role of the pancreas is to produce and send insulin into the body to help control the level of blood sugar.

In Alex’s case, her pancreas is still producing insulin, but no longer making the digestive enzymes to break the food that she eats on its own.

The workup behind her EPI, while extensive, did not reveal a cause yet. Though answers would be preferable, the Rapp family is happy just knowing Alex has never presented with pancreatitis and her condition is manageable with the proper care and medicine.

Today, Alex weighs around 114 pounds and has climbed steadily to the 42nd percentile for weight. She has improved to the point where she can eat and not feel pain. Her pancreatic enzyme replacement medicine gives her the enzymes her body is not producing, to break the food into nutrients.

“Taking the [enzymes] has made all the difference in the world for Alex,” said Jacqui. “She has a very broad palate. She doesn’t like hot dogs, but she loves sushi.”

Alex said she always carries her pills with her. She eats when she wants to – usually five times a day – and refuses to let her condition control her life.

“When I first got the diagnosis, I thought it was a normal teenage issue,” said Alex. “Then I realized that I was very underweight and not doing well. It’s one of the things that you deal with as it comes along. I’ve kind of rolled with it. I’m taking the medicine and moving on with my life.”

Looking to the Future

After graduating high school, Alex will attend Marian University in Indianapolis. She plans to study theater and communications and hopes to work in the business and marketing sides of theatrical productions.

In addition, Alex is a recently published playwright. The Actors Theatre of Louisville will produce her one-act play, “Once Upon a Break Room,” this April.

“I’m big into performing and the different aspects of my school theater,” she said.

As she enters college, Alex will remain a patient at Cincinnati Children’s. She will be seen by Pancreas Center staff as needed, but will also have regular visits to the Diabetes Center every two years for glucose tolerance tests to ensure her body is still producing insulin. 

Pancreas Center nurse Angie Turner said it’s been gratifying to see Alex’s steady weight increase during her five years as a patient at the Pancreas Center. 

“We still don’t know why she has this [EPI], but she’s doing amazing, and our job is to allow her to achieve her best potential,” said Turner.

Alex’s family is one of so many who are part of the pancreas family at Cincinnati Children’s. Team members know them well. 

“It’s really helpful when you know them. They don’t have to tell their whole story again,” said Turner. “They know when they call here, they are going to talk to Nurse Angie.” 

(Published March 2020)