Learning in Slow Motion

Dad here:

One of the most frustrating things about this disease is that it affects each person differently. What causes one patient to react won't affect another. It is like each EoE patient has their very own personalized version of the disease. I've read dozens of articles about EoE. I've attended the APFED Conference. I've done lots of research so I feel like I know a lot about the disease, at least as much as is commonly known (there is much that isnt' known.) The problem for me is I know nothing about Oliver's version of EoE.

It's been 4 months since Oliver had his first Endoscopy and was diagnosed with EoE. He's been through several different medications. We have eliminated 7 foods to which he may or may not have a sensitivity. Has it made a difference? Yes, he is definitely doing better but I want to know exactly which foods cause Oliver's version of EoE to flare up. I want another endoscopy to see if the changes we made have had a real effect. Everything moves so slow. I don't want to torture our little guy with constant endoscopies, but I want scientific data. I don't know with certainty that any of the foods we eliminated are causative with regards to his EoE.

I know it will take years to get Oliver to a stable state (or maybe he'll never be there - I've heard recently of allergies morphing) but it still bugs me. I tell people this all the time. I tell myself this all the time, but it isn't any comfort. The process is just too slow for my linking.

All I know for certain right now is: He had eosinophils in his esophagus 4 months ago. He develops a rash (eczema) when exposed to milk (orally or topically). When we eliminated wheat his stools improved. Topical Corticosteroids administered orally seem to make him feel better. I want to know more. I want the process of investigation and learning about Oliver's specific version of EoE to speed up, but there doesn't seem to be any hope of that.

I guess I should just be grateful we got a diagnosis so quickly. Many people don't receive an accurate EoE diagnosis for many, many years.