Driving 700 Miles for Expert Care at Our Cincinnati Center for Eosinophilic Disorders
We all know fussy eaters. But what about kids who can’t eat certain foods? The kids who have food allergy reactions to things that most people take for granted – dietary staples such as bread and rice. That’s when kitchen creativity and multiple meals become necessary for moms like Sarah Aurit.
All of her four children – J.P., 17; Gianna, 15; Lizzie, 13; and Andrew, 4 – have been diagnosed with varying degrees of eosinophilic esophagitis (EoE).
What Is Eosinophilic Esophagitis (EoE)?
Patients with EoE suffer from a large number of white blood cells called eosinophils in their esophagus. These cells can cause injury and irritation to the esophagus, resulting in vomiting, abdominal pain and difficulty swallowing.
With each child being different in terms of foods they can eat, Sarah and her husband, Scott, are forced to carefully plan out meals.
“I remember the days when it seemed like no one could eat. We juggle medications, tube feedings, and a lot of cooking," said Sarah. "Teenage life has been interesting within this realm of a limited diet. I am proud of my children and their ability to navigate difficult situations. The fact that everyone in the family deals with modified diets has helped us learn how to rally around each other.”
Both J.P. and Lizzie are currently patients at our Cincinnati Center for Eosinophilic Disorders (CCED). J.P. has been a patient since 2007. Gianna joined him a few years later, but because her form of EoE is considered the most easily managed compared to her siblings, she is now treated near their home in Elkhorn, Nebraska, on the western side of Omaha.
The youngest, Andrew, will likely become a patient at Cincinnati Children’s, possibly a few years after J.P. graduates from high school.
“It’s the logistics of bringing another child and the scheduling and everything. And we really need to try hard to optimize what we have here (in Omaha),” said Sarah.
Why Cincinnati Children’s?
It makes sense to travel 700 miles to Cincinnati three to four times a year, according to Sarah, given the expertise of the staff and the improvements both J.P. and Lizzie have made thanks to various food trials.
After struggling for years to understand the condition, the Aurits were happy to get questions answered after their initial week of testing by the CCED team.
“I remember having a huge sense of relief during our first visit,” said Sarah. “There was a clear understanding of what we were dealing with and it felt like for the first time that we had options and a pathway to best manage this disease.”
Gradually over the years, J.P. and Lizzie have increased the number of foods they can eat to help complement their daily “formula” of amino acids which they receive from feeding tubes implanted in their abdomens.
J.P. is now operating on a 60 / 40 split between food and formula, and Lizzie is making great progress, as well. Fast food isn’t much of an option, but they’re long removed from the days when each could have only a handful of real foods.
“Basically, we are not eating out a lot. For a while there, it was baked potato from Wendy’s as our only option," said Sarah. "We’ve definitely moved beyond that. We’ve done so many food trials that we don’t feel constrained.”
More to Life Than Food
Eating is just one aspect of life, and J.P.’s advice for anyone dealing with food allergies is to not worry about missing out on foods that look good.
“Having the food that you want, just because it looks good, is not worth it,” said J.P. “Eating pizza is good for five minutes, but then you deal with hours of stomach aches. The temptation is not worth it.”
The good news, he points out, is there are plenty of things to do besides eating to help keep your mind focused on the positive. For him, it’s playing video games and sports with friends and playing trombone in the high school marching band.
Lizzie also has a group of supportive friends who are understanding of her condition. Low bone density means no sports for Lizzie, but she stays busy playing piano and trumpet and also works on the school yearbook and theater productions. She echoes her brother’s advice.
“Find something that you really like to do to get your mind off what you are going though. Figure out something that you love to do. It’s mind over matter,” said Lizzie.
Negotiating with Each Family
Their doctor, Philip E. Putnam, MD, describes the two as intelligent and personable with a good sense of humor. The severity of EoE varies from patient to patient, but so does the individual’s outlook on life and expectations moving forward.
“Some [patients] are so focused on the diet that they allow the limitations to interfere with their daily life, while others are more accepting,” said Putnam.
J.P. and Lizzie fall in the latter category. They are both patients with somewhat prototypical EoE, added Putnam, in the sense they’ve had a number of endoscopies done to monitor the disease and are working hard to expand their diets.
Other patients aren’t as fortunate and are unable to make much dietary progress because of the particular sensitivity their immune systems have to food.
“There is a lot of variability,” said Putnam. “There are some who want so much more than they’re ever gonna get. But we don’t promise anything.
“Part of the way that we practice is to negotiate with each family, which form of therapy they are going to do. We don’t tell folks they have to do this or that. We give them the options and let them choose to see what will work best for them.”
For instance, Putnam said, if a family can’t maintain a certain diet at home, there are alternatives such as medicine to help control the disease.
Food trials help many patients expand their diets incrementally, but upcoming drug studies in the next five years could pave the way for further expansion of diets, Putnam predicts.
“We don’t know for sure, but we’ll see. Studies are just being started. It will take a while to complete them, get the results and then get the drugs in practice and approved by the FDA. There is a lot of work ahead.”
(Published February 2020)