Connecting the dots can be one of the most challenging and frustrating aspects of food allergy parenting. Sometimes you live on fast forward, chasing food freedom. It's only when you slow down to navigate bumps in the road that you can connect dots and reveal the full picture. Janine Flannery, founder of The Allergy Aspect and long time food allergy and EOE mom, shares her son's OIT experience that ended with a hard stop after an EOE diagnosis.
Our oldest son, now 14, was diagnosed with food allergies as an infant.
I remember vividly. It was one bite of banana that caused his first of many anaphylactic reactions. Allergy testing revealed many additional foods to strictly avoid.
Our son has been through many food challenges as we worked closely with his allergist — some allowing us to add foods to his diet, others reinforcing that numerous foods had to remain off limits.
When you live with strict food avoidance, the prospect of achieving some level of food freedom and normalcy is something you think of often. It's really hard. We’ve lived it.
Our path led us from years of strict food avoidance to attempting oral immunotherapy (OIT). However, our OIT journey ended abruptly with an eosinophilic esophagitis (EOE) diagnosis.
My goal, through sharing our family’s OIT experience and our son’s EOE diagnosis, is to educate others.
When you’re looking at OIT as a possible option, it’s about asking lots of questions and having detailed discussions with your allergist and physicians so you know enough to make an informed decision on whether to move forward with OIT. Or not.
Hindsight is 20:20.
Going back years now, our son’s allergist would ask what foods we really wanted him to be able to eat from the long list of Top 8 and non-Top 8 we avoided. We would always say “…wheat, milk and egg…”. To us, these three foods would have been life changing for our family. We felt these three foods were a gateway to an easier lifestyle that included the possibility of eating foods from outside our kitchen.
Eventually our allergist spoke about the availability of OIT to desensitize our son’s body to his allergenic foods. My husband and I asked lots of questions, did our research, and combed the clinical trial results to get comfortable with OIT. With guidance from our allergist, we started with wheat desensitization and a plan to add other foods.
Our allergist alerted us to a low probability of developing symptoms of EOE, a chronic illness. We were reassured that if any EOE symptoms surfaced, we would stop the OIT process and those symptoms should subside.
Three years into our son’s OIT journey, I remember feeling that something seemed off. I wasn’t in a rush to up dose wheat according to the treatment center’s established schedule. We took it slowly.
Luckily we did.
I thought I was seeing things that weren’t really there; I thought my comments were insignificant. It was the occasional comments and discussions with his allergist at dosing appointments, the nuances of complaints our son voiced, that prompted us to look deeper. While we continued OIT, our allergist referred us to a fellow pediatric gastroenterologist (GI).
Fast forward more than three years into wheat OIT and our son was diagnosed with EOE.
Looking back, prior to beginning OIT, our son probably had underlying symptoms of EOE that went undiagnosed – gagging on food as an infant and toddler (requiring months of feeding therapy), drinking lots of fluids, and poor growth. It wasn’t until we started to gradually increase the amount of wheat for OIT that the EOE kicked into high gear. At that point our son complained of stomach pains, pressure and pain in his chest and what he’d call ‘wobbly legs’, which was how he described feeling faint. He was missing school and eating became extremely challenging. It was a scary time for all of us.
Under the direction of our GI and allergist, our son stopped OIT, but that did nothing to alleviate his discomfort or reduce his eosinophil biopsy count. Our son had avoided 8 of the Top 9 most common allergic foods most of his life. Then, at age 11, we modified further to avoid all of the Top 9 and other foods. We had to start supplementing his nutrition with a hypoallergenic formula.
He lived through endoscopy after endoscopy (the only true way to monitor the presence and level of eosinophils in the esophagus and digestive tract), and many failed treatment options with debilitating side effects. We finally found a treatment approach that is working better for our son and he is now on a good path.
We remain hopeful because the American Partnership for Eosinophilic Disorders (Apfed) is making great strides in researching the prevalence and diagnosis of eosinophilic disorders.
OIT is a powerful treatment that can help increase tolerance to allergenic foods for some patients. The more you know, the better prepared you’ll be if you decide to move forward with OIT. I’ve included a few takeaways to consider, some from my family’s personal experience and some from Apfed.
1. Trust your gut.
If there are any small comments or complaints, discuss them with your allergist/physician.
2. Look in the rear view mirror.
Think back to when your child or adolescent was a young child and any particular memories about their eating and drinking behaviors.
3. EOE is difficult to diagnose. Be persistent and patient.
Not everyone has the same complaints but some of the common symptoms with their approximate age of onset are summarized by Apfed on their website. Recapping here:
Reflux that does not respond to medication {acid suppressors} (Age of onset: infant, child, adult)
Difficulty swallowing (Age of onset: child, adult)
Food impactions {food gets stuck in the esophagus} (Age of onset: older children, adult)
Nausea and vomiting (Age of onset: infant, child, adult)
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite (Age of onset: infant, child, rarely adult)
Abdominal or chest pain (Age of onset: child, adult)
Feeding refusal/intolerance or poor appetite (Age of onset: infant, child)
Sleeping difficulties due to chest pain or abdominal pain, reflux and/or nausea (Age of onset: infant, child, adult)
4. Find an allergist and/or gastroenterologist who listens to you.
Diagnosing has a lot to do with the nuances of symptoms. Always communicate your concerns to your allergist and physician.
While our OIT journey has ended, my hope is that my family’s experiences will lead you and your family to a bit of success in pursuing food freedom. All the best to you and your family on your journey.
Feel free to reach out with any questions and visit me at theallergyaspect.com, where we’re living creatively and finding balance in the simple, every day.
About the Author: Janine Flannery is the creator and founder of The Allergy Aspect, an online resource for anyone living with or caring for someone with food restrictions from food allergies and EOE. Managing these chronic illnesses for her son for over a decade, Janine’s passionate about connecting with others living with similar challenges and sharing how they live their life fully. With a brand management background in the natural foods industry, she brings unique perspectives with experience as a food allergic consumer and food industry professional. Visit Janine on Instagram and on Facebook (@theallergyaspect).
Images: Courtesy of The Allergy Aspect and AnuitaStudio