In Stories

Eosinophilic Esophagitis

The beginning days of parenting our daughter Audra were filled with all the delight of most first time parents. Audra’s first week home, we would tiptoe into her nursery and just stare at her tiny form. We were in complete awe of our little miracle and so full of thanks and amazement as we watched her grow and change. The way she saw the world and took in every moment showed us glimpses of her personality. Each milestone, from rolling over and sitting up to crawling, walking, and first words, was filled with fresh excitement. Oh, what a fun first year.

Shortly after her first birthday, though, Audra had a scary choking episode that we shrugged off as a fluke (she was eating baby goldfish, after all). Within a week of that episode, however, she began running a fever and gagging/vomiting at meals. Little did we know that we were entering a 7 month long season of no answers for these symptoms. Our new normal became 1-2 doctors visits a week, Audra gagging and vomiting with almost every meal (despite being moved to a diet of mostly purees), weight loss, and medical tests and procedures.

During this time we felt confused about what was going on and helpless that we couldn’t fix these episodes. It was hard to go through the days of no answers. I’ll never forget the time when Audra and I had gone on a trip to the west coast to visit family. She had been experiencing a short respite from symptoms, but upon our arrival, they came back with a vengeance. My mommy heart was perpetually on edge about food because I never knew what was going to set off one of her vomiting episodes. After she had an especially painful and difficult episode while we were there, I was able to get her cleaned up and settled in bed for a nap. As soon as I closed the door to her room, I melted into tears and sobs. My sister-in-law caught me and cried with me. I felt so scared and alone and yet so loved and supported. That would become the theme for this journey.

Our days became marked by:

Breathing out confusion. Why can’t we get an answer to what is going on with our little one more easily?
Breathing in assurance. God had given us our daughter, and we know His plans for her are for good.

Breathing out anger. How can a doctor shrug this off as a stomach bug?
Breathing in peace. Prayers and support of friends and family brought us peace and community when we needed it most.

Breathing out heartbreak. When the nurses took our little one from our arms for a procedure or, almost worse, having to help hold her down and look into her scared eyes as they performed a difficult test.
Breathing in comfort. We bathed ourselves and Audra in Scripture, and our souls were truly washed with the water of the Word. His promises comforted us and were balm to our tired hearts.

Breathing out fear. Watching Audra lose most of her meals.
Breathing in His promises. Trusting in His goodness.

During this 7 month phase, we didn’t know that Audra had a condition called Eosinophilic Esophagitis (EoE). Stay tuned for the next part of our story.

Click here to continue to part 2 of our journey with Eosinophilic Esophagitis >>

 

Showing 11 comments
  • Edna De Jesus
    Reply

    Hi my name is Edna mad my 10 year old daughter was just diagnosed with EOE, trying my best to find research on this new diagnosis but very frustrating the doctors don’t know too much and want her to go through a research study which I seem to be a little skeptical about doing. Good to know that I’m not the only one going through this frustration. Any advice would be helpful

    • Mary Beth Thomas
      Reply

      Hi Edna, I am so sorry about your daughter’s diagnosis of EoE. It is a lot to take in in those first days and weeks, I know! You will learn the lingo and dietary restrictions quickly, though. 🙂 I can’t offer any advice, but know that I am praying for you and for her now~

      • David Druckenmiler
        Reply

        Hello Mary Beth,

        Very affecting to hear your story. Very familiar and comforting. We have two boys who have it. One has shown considerable signs of improvement with swallowed Flovent while the other has not. Could we ask what medicines were helpful to Audra’s EoE? Thank you very much!

  • Dee Leonard
    Reply

    My son,26, just diagnosed with this EoE. Only symptom, got trail mix stuck in throat,had to be put to sleep to remove it. Doc scoped him and can’t dilate the esophagus, stated it is very bad. Not sure what to do. He feels nothing is wrong since no symptoms, but now he can feel rightness in throat. Diameter size of a pencil. Need guidance

    • Mary Beth Thomas
      Reply

      Hi Dee, I’m so sorry to hear about your son’s diagnosis and the difficulty he is having. It is so difficult to feel helpless as we watch our children walk through a medical diagnosis. We can’t offer you any medical advice, but we can tell you that you are not alone in the journey! You may appreciate reading some of the other stories to see how parents navigate faith and hope along the journey. Praying for hope for you all as I type!

    • Irene Alibrando
      Reply

      Hi Dee – My name is Irene, and your story caught my eye because my son is now 27, and he was diagnosed with EE when he was 10. At that time, there was little know about this disorder. It was very difficult. I can tell you that we did the elimination diet – took him off all food for 6 weeks. He had to drink an infant formula to survive. Then we introduced one food at a time for 6 weeks. After each submission he was scoped to see if there was a reaction to the eosinophil count in the biopsies. This went of for 3 years. He ends up being allergic to gluten, dairy, soy, and we never tested treenuts or peanuts because this was all too daunting, and we felt he could live without those. Today, at 27, he is fine. He recently had a scope (first one in about 8 years) and the doctor said he never would have known he had EE from looking at this recent scope. Esophagus was perfect. And so I write this because I was never able to find a person with a positive ending when I was grasping at any straws, any kind of hope. Everything I found on the internet was very distressing. Even the support group I attempted to go to was horrific. And so, I just want you to know, it is a difficult road. You have to have patience and a good GI doctor. But your son will find his way through this. If you would like any other information – please feel free to contact me.

      • Andrew Thomas
        Reply

        Thank you for sharing this, Irene!

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