One thing I have learned about Gavin's disease, Eosinophilic Esophagitis (or EoE), is that like a roller coaster, it has ups, downs, twists and turns, and even when you know a drop is coming, it still takes your breath away.
Over the last few years we have been able to determine that dairy and soy are the biggest food triggers for Gavin's EoE. With both foods eliminated, and a daily dose of swallowed steroids (Flovent), we achieved a biopsy report of 0 eosinophils...that of a normal esophagus, which was a tremendous win. For over 2 years, Gavin continued the elimination diet and allowed his esophagus to heal. He felt great, but emotionally, he was struggling with the diet. He was depressed about the foods he was missing, and it was starting to bother him more and more when his treat was different from the class, or he had to pick from his special snack bin instead of sharing in the pizza party or cupcake celebration.
In August of 2013, we decided to trial dairy. We had removed dairy and soy at the same time, so there was no proof that both were doing damage, and it was worth figuring it out. The very first thing Gavin wanted to do was go to his favorite Mexican restaurant and get chips and cheese dip. He was in heaven. The results of the biopsies a few months later showed that dairy was doing about half the damage, which is pretty much what we expected. After reintroducing dairy, his eosinophils were no longer 0, but they weren't as high as they had been before eliminating both foods either...and he was so happy. After a discussion with his GI about quality of life, emotional health, and physical health, we all decided to let Gavin keep dairy even though it was still causing damage. He was instructed to be vigilant about his daily medication and still eliminate soy.
We have had a wonderful and easy 2 years. Cooking and eating out have been so much easier with only soy eliminated, and Gavin has thrived emotionally. Over the last year though, his symptoms have slowly gotten worse and worse. He now complains daily of stomach aches, headaches, fatigue, and sleepless nights. With each complaint, I remind him that the dairy he is eating is causing him to feel bad, and that when he's ready to feel better, we can go back to eliminating dairy. It is important to me that he feels some control over this decision, because ultimately, I can't be there all the time, and if it's not his choice, he is going to be more likely to 'cheat' when he is at school or friends' houses.
Tonight I laid with him in his bed, as I always do, and we were ending the day with snuggles and talk. He said he was tired of his stomach hurting all the time, and he was ready to remove dairy again. I knew this day was coming, and I know it needs to happen for his poor little body to heal, but hearing him say he was ready just broke my heart. It hurt because it tells me exactly how much pain he is in all the time. If you have any idea how much this kid loves cheese, you know he's hurting if he's ready to give it up. At the same time, I had such admiration for his grace and courage. I told him that I was proud of him, and that I knew it was a hard decision. Gavin replied with "yeah mom, hard but good". What an amazing kid.
He has decided that this weekend is when it will happen, so we will make a trip to Whole Foods and stock up on 'safe' foods, and begin again. As I lie here typing in the dark, because I can't sleep, I am thankful for the last 2 years. Watching Gavin live a more 'normal' life gave me an emotional break from this disease. I was able to heal and grow stronger so that I could be ready for this next round. Tears fall tonight for my sweet boy and what he endures, but tomorrow they will be dry, and I will be his cheerleader.
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