May 17-23 is National Eosinophilic Awareness Week, which drives to raise awareness of the rare condition.
Jennifer Brenneman said her son, Cody, a 7-year-old from Napoleon, was diagnosed with Eosinophilic Esophagitis in January 2019. She said it took until age six for the diagnosis after years of misdiagnosis and doctors being unaware of the disease.
The American Partnership for Eosinophilic Disorders (Apfed) states eosinphilic esophagitis (EoE) is “a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.
Brenneman said awareness of the disease allowed her son to adjust his diet and finally alleviate what he was going through.
“Now with the elimination of wheat, dairy, soy, egg, fish, nuts, corn and legumes, we officially got results that we achieved remission on Jan. 3, 2020,” Brenneman said. “It took a year but we made it!”
At this stage, Cody now gets to reintroduce foods into his diet as trials.
“Now we get to reintroduce one food at a time (such as one type of nut), and have scopes with biopsies every 12 weeks to see if the eosinophils came back,” she said. “We are currently trialing egg, but our scope was canceled due to COVID-19 — we’re waiting to reschedule.”
Brenneman said getting to the root of the problem wasn’t as easy as eliminating general foods, as, sometimes there are ingredients that aren’t immediately evident they are made from foods being avoided.
“There was a lot of what I call ‘mom instinct’ involved,” she said in being involved with addressing her son’s eosinophilic esophagitis. “Normally the doctors try steroids first, but we really wanted to get to the bottom of the issue and not just mask it. The first scope at Cincinnati was not clear, even with eliminating wheat, dairy, egg, soy, peanuts, tree nuts, fish and shellfish. I had been keeping a food diary during those three months and had suspicions about corn and legumes.
“EoE reactions are not the same as anaphylaxic reactions, to where you know immediately what the food was. It takes days to weeks for the eosinophils to build up enough and start attacking the esophagus,” Brenneman explained. “His most common symptoms were random vomiting and stomach/esophagus aches. Once we cut out corn and legumes, we had a couple mistakes made where he ate foods that had hidden ingredients or changed their ingredients. Modified food starch was our nemesis, as we didn’t know it was usually made from corn. He was at the nurses office daily at the beginning of the year because his lunch meat had it in it.”
Brenneman said Cody went through five total scopes in one year, and the previous scope provided results the family had wanted to hear.
“His last scope was when the surgeon came in and said, he thinks we did it. There were so many tears and excitement,” she said. “We have to wait sometimes as much as a week to get biopsies back. The esophagus can look good but still have eosinophils, so you have to wait for official results.”
Brenneman said if that scope hadn’t gone that way, the next step was to place a feeding tube and switch to a formula-fed diet.
“It was our greatest fear, but if you don’t know what to take out next, you have to start the other way and take everything out and add one by one,” she said. “They did not want to allow his esophagus to become more damaged. If cases are left too long, it can result in rings that bind the esophagus and/or the tube becoming so small normal food cannot pass through.”
These visits were done at the Cincinnati Clinic, where Cody was going every three months for the biopsies. Brenneman said a previous doctor made a brief suggestion of the diagnosis of EoE, and, when she researched the disease, she found this clinic has people fly in from around the world because of its expertise.
“I decided to go for a consultation with them. I figured a three-hour drive was nothing since I was already going to Toledo,” she said.
“The Cincinnati Clinic has been a godsend, and when we are there, Cody always gives extra blood and biopsies for their research,” Brenneman said of the clinic. “The first week there, you have a behavioral appointment, allergist appointment, gastroenterologist appointment, the scope, then another gastroenterologist appointment at the end of the week to discuss results. They don’t try to push specific treatments. His doctor, Dr. Bolton, is very informative and really asks Cody questions, not just me.”
Brenneman said the clinic also works with a nearby Ronald McDonald House, which has provided a room for the family to stay at for most of their trips. She said, even when they had to stay in a hotel, it was at a provided hospital discount rate.
Despite the diagnosis, Cody is still active. He is a second-grade student at Napoleon Elementary School and has participated in studies with Kurt’s Karate for almost three years.
“He is three belts away from his junior black belt. He has not let his diagnosis hold him down at all!” said Brenneman. “Cody is a warrior that has endured suddenly eating a very limited diet, numerous scopes and bullying at school. He still has a positive attitude and great outlook on life.”
With May 17-23 marked as National Eosinophilic Awareness Week, Brenneman said she hopes awareness can be raised on the signs and symptoms of the disease.
“As it is still considered a rare disease, it is becoming diagnosed more as the medical community is becoming educated on it,” she said. “In 2003, there were 1 out of 10,000 diagnosed, and now it is 1 out of 1,000. I hope that we can help even one person out there to know that they are not alone, and to know what symptoms to look for. I would like to alleviate the years of misdiagnosis and pain he had to endure.
Those interested in donating toward the cause can do so at curedfoundation.org/donate.