The time has come to start eliminating foods...



EoE buddies



Where to begin. Well I guess I should first apologize for taking so long to post the results of Gavin's scope. As many of you who deal with EoE know, no matter what you prepare yourself for, it never quite goes the way you think it will.

This was Gavin's second endoscopy. His first scope was last July when he was diagnosed, and this one was to determine if the swallowed steroid treatment was working. Going into the procedure, we were hoping for a clean scope, meaning no eosinophils and no inflammation or furrowing, but would have been happy with a low number. The scope experience was much more fun this time because Gavin's friends Camden and Lawson were scheduled for their scopes on the same day, and I'm friends with their mom, so the boys and I both had some support. We saw our friends, got Gavin prepped, and then I held his hands while he went to la-la land. There I was again, sitting in the consultation room waiting for news while I entrusted the nurses and doctors with my child's life. Last time, the waiting was the worst part. This time, the news was the worst part. Gavin's doctor came into the room and said that Gavin's esophagus looked like one of a newly diagnosed EoE patient. My heart sank. I knew that we would have to wait for the pathology results from the biopsies, but he was basically telling me that it looked like the steroid treatment had done nothing.



in recovery



"Don't be discouraged" were his words to me. So I tried to hang on through the next two days while I waited painfully for the numbers to come back. Two days later I spoke with the nurse and she told me that Gavin had 53 EOS (eosinophils) per HPF (high powered field). There was no miracle. The numbers only confirmed what the doctor had seen. There was very little change from his first scope, where he had 59 EOS per HPF. I didn't know exactly what this meant for treatment, but I knew the steroids alone were not doing the job. Our GI doctor was going to consult with our Allergist to discuss increasing the steroids, eliminating foods, or both. By the time I got the call from the GI, I knew what we were going to have to do. In the words of my 7 year old daughter, "Gavin's not one of the lucky EoE kids who can eat anything anymore, is he?"

So it's time to start making some tough decisions. I knew the day would come, but I really thought we had more time before we had to take foods away from Gavin. Both doctors think we should begin an elimination diet, one just proposes a more conservative plan than the other. Gavin's GI thinks it would be okay to start by removing only dairy and soy instead of all of the top 6 EoE allergens (milk, soy, eggs, wheat, peanuts/tree nuts, and seafood). We have an appointment with the allergist tomorrow, so I'll have a better idea of his suggestion, but it sounded like he typically recommends removing the top 6. We also have an appointment with the nutritionist to make sure Gavin gets what he needs as we remove foods. There are many many families out there who deal with food allergies, whose children can't eat what other kids can, and who have to tell their kids no for their own good, but this is a big first for our family, and it's a sad day.

For now I will remind myself that my child still gets to eat food. That as of today, he has no tubes going into his body to give him the nutrients he needs to grow. I will be as positive as I can for him, and remind him that these changes are to help him heal and feel better. I'm a 'glass half full' kind of gal, and I know it could be (and probably one day will be) a lot worse. But today I mourn a loss for my child as I prepare to take something away from him instead of giving to him, and I curse this disease. I will have a good cry tonight, and tomorrow I will look on the bright side.