My son suffers from a rare disease called EOE (eosinophilic esophagitis, previously known as EE) on top of 6 anaphlaxic food allergies and asthma. I try to honestly share the triumphs, hard days, and everything in between about our unique journey. I’m an open book and am happy to share what we’ve learned. I share most of our stories either in the blog posts, or via my Instagram page. I hope you’ll join me!
Here are some other good online resources for those just starting out:
Allergic Living (magazine)
Cincinnati Hospital (considered the top hospital for kids’ EOE–and main leading research hospital for it too)
APFED (non-profit–they also do yearly conferences, and are good at staying updated)
An online support forum on Facebook that I’ve found to be helpful when I want to see how other family’s are handling the disease.
Utah Food Allergy Network (for those in the area)
Also, a frequently asked question that we get is if my son is on medication. While many with EOE commonly take swallowed Flovent or Budesonide, we have been able to keep him medication free (except for a two-week stint to get the inflammation cleared up right after the diagnosis). You have to find what is right for you. We manage his disease completely through diet by avoiding all of his triggers. He has had 6 scopes in the four years he’s had the diagnosis, with the last four being clear.
I wish any person going through EOE much love and support as it’s such an individual disease. My advice to new beginners is always to find a good allergist and GI that will work together, a dietitian that specializes in limited diets, sometimes a feeding therapist (if it’s a young child), a good support system and a detailed food journal to help you find your food triggers.