HaleyOur 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 of Eosinophilic Esophagitis, 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 Eosinophilic Esophagitis 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 Eosinophilic Esophagitis, 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.
[…] most common allergens: wheat, dairy, soy, eggs, peanuts/tree nuts, fish/shellfish. After his recent Eosinophilic Esophagitis diagnosis, I knew an Elimination Diet was the next step, so I’ve been scouring the internet for tips […]
Hi! I’m so glad I found your blog. My son ( 22 months) was diagnosed with eoe last December. I’ve gone through a similar path to diagnosis and I’m still trying to navigate through it. I appreciate the resources you’ve provided!
-Alejandra
Welcome! Yes it continues to be a journey. I’m hoping they make great strides in the EOE world in the next few years.
[…] background on my son’s story, see my initial EOE post as well as my post on his first two […]
[…] water on a blue-sky day refreshed my Mama spirit, which has been weighted down by thoughts of diagnoses and treatments and special diets. It gave me a chance to see my kids being kids in nature and […]
My 20 YO daughter was just diagnosed with EoE. Knowing this is more prevalent with children makes me question how much she has suffered over the years. Her doctor said this is a highly hereditary disease. Have either of you been diagnosed with this disease? Do you have other children with it? Based on the symptoms you shared above, I now wonder if my youngest has it too. Appreciate you sharing your story so we can learn from your journey.
We suspect my husband has it, because he got food stuck in his throat as a child often. He also gets itchy when eating certain foods. He has never been tested, mainly because he just alters his diet accordingly when he realizes he reacts to a food. He has a lot of willpower and really just sees food as fuel. It’s much hard to control the mind with food as a child. I also think my husband’s father may have it, or at least he shows some symptoms such as dysphagia.