The Journey to Eosinophilic Esophagitis (EoE)

face of EoE

Our journey toward the diagnosis of Eosinophilic Esophagitis (EoE) for my son Beau was two years in the making. Looking back, I can see small pieces of the puzzle forming together in my mind. The blood in his stool at just a couple months old. RSV at 5 and 6 months. Recurrent ear infections and his first set of tubes at 8 months. Projectile vomiting his first bottle of formula at 10 months. Hives from scrambled eggs at 11 months. Constant eczema. Constant runny nose. Constant colds and subsequent wheezing. Choking. Gagging. Vomiting.

In his short lifespan, he’s seen five specialists: Ear, Nose & Throat, Immunologist, Gastroenterologist, Allergist, Pulmonologist–and that doesn’t even include Audiologist or Speech Therapist. But looking at him, you’d never know anything was amiss with this rough-and-tumble little boy.

So far, he’s had two sets of ear tubes, and we’ve had his enlarged and infected adenoids and tonsils removed. We’ve tried homeopathic methods of elderberry syrup, bovine colostrum supplements (for low IgG), a dairy-free diet and weekly chiropractic adjustments. He’s taken a dozen or so rounds of systemic steroids in his lifetime, more antibiotics than I can recall (most of which he is now allergic to), an adult dosage of acid suppressant and enough albuterol breathing treatments to resurrect a small army. He’s currently taking inhaled Flovent for respiratory issues, swallowed Pulmicort for EoE and we have an EpiPen handy for his newfound tree nut allergy.

Scaling a Brick Wall

As a mom, I know what it’s like to feel like you’re up against something big and undefinable. I know what it’s like to hate doling out medicine but not sure where to turn. I know what it’s like to keep pushing for answers while others tell you not to worry because your child is thriving. I know what it’s like to feel that gut instinct that something’s not quite right. And I also know what it’s like to hear the heartbreaking words of a diagnosis you’ve suspected for months casually spill out of a doctor’s mouth. I know what it’s like to blink back the tears and put up a strong front, not for your own pride but for your child.

But with the clarity of a diagnosis we can now move forward toward a path of healing, one that uses medicine in the short term but I pray moves away from it in the long term.

I’m unsure where this EoE journey will take my family. I’m unsure of Beau’s trigger foods or the type of special diet he will have to adhere to. I’m unsure of how it will affect my meal planning or my pantry. I’m unsure of how it will affect his socialization or his school attendance in the future. But for now, I’m taking it one day at a time and clinging to the Word and His promises. There are so many unknowns not just with this disease, but with life in general. At times, I feel so weighted down by the encompassing nature of EoE, but I am trying my best to count my blessings and not harp on life’s obstacles.

And I write all this not to blast my son’s health issues on the internet or seek out sympathy from my peers, but rather to provide a resource to another mom out there who is seeking answers and diligently fighting for the best for her child. I spent months searching online for first-hand accounts of children with EoE, but turned up only a few blogs, most of which were updated more than two years ago.

I’m gathering as many resources as I can and pinning them to my Eosinophilic Esophagitis EoE board for myself and for others. If you have any resources to share, please let me know.

 

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