Here we are again...the day before a scope. My friend Glendia keeps asking me if I'm nervous yet, but I've decided to go with the mentality of 'what's the point'? It doesn't matter how you prepare yourself before a scope...you're never ready for the news. I figure that since the last one showed absolutely no improvement, I'm hoping for the best and preparing for the worst.
After our original diagnosis, we tried just treating with swallowed steroids (pulmicort splenda slurry). We thought we were one of those unique cases of EoE where Gavin could eat anything as long as he took the steroids. Well, we were wrong. So, we took a baby step down the road of food elimination diets. While most doctors would recommend taking the top six allergens away right from the start, our wonderful GI gave us a more palatable option of only removing dairy and soy to start. Since Gavin has eaten all foods his whole life, and since the thought of providing top 6 free meals was daunting to me, we felt this was the right choice for our family.
Removing dairy and soy from Gavin's diet was challenging at first (to say the least), but with the help of friends, online support, and many natural food stores within our reach, we learned quickly and adapted. Gavin immediately started eating more and having an appetite again, which was encouraging. In addition to the elimination diet, we also changed his steroid treatment to Flovent. The Flovent comes in an inhaler and would typically be inhaled for asthma treatment, but since the inflammation is in Gavin's esophagus, he puffs the medicine into his mouth and then swallows it, instead of breathing it in. The main side effect of swallowed steroids is thrush, a yeast infection in the esophagus, since he can't eat or drink anything after taking it. We did have a bout with thrush already, but the 21 day treatment cleared it up.
Unless this scope shows no eosinophils, we will proceed to the full top six elimination diet, which means removing wheat, eggs, fish/shellfish, and peanuts/tree nuts. It will be a hard transition, especially for Gavin, but I have much more confidence now than I did when we faced this option a few months ago. I'm praying like crazy for a miracle because no mother wants to take food away from her child, even when it is to make them better. The next few months include many holidays focused around food and Gavin's 6th birthday, and it breaks my heart to think about how it will be, but I have to stop myself from looking too far down the road yet. Let's get through the week and see what the numbers are, and then we will hold tight to each other, draw strength from God, and face whatever comes next.
Thank you all for your continued prayers and support. It carries me through the hard times and helps me focus on how lucky we are for what we do have, which is a lot of love. I'll update tomorrow and let you know how the procedure goes.
