Why am I doing this? Why am I writing this blog? I mean, here’s the deal: I tend to be a “dream big with no plan” kind of person. I think of things that would be cool and then never follow through. I once decided I should try to organize a Skype conversation with the former president of Costa Rica. Do you want to guess whether or not that actually happened?
So why this blog? Let me introduce you to Reese.
Reese is my son. At the time of this writing, he is two years old. He is the one who introduced us to the twisted world of eosinophilic esophagitis.
Reese was a pretty big baby. He was about 9 lbs 4 oz and about 21 ½” long. He only got to wear newborn clothes for about one week. Around 6 or 7 months, he stopped growing. We didn’t really notice, though. Not at first at least. He had some pretty wicked eczema and was diagnosed with an egg allergy, but he still seemed to be going strong. After he turned a year old, we noticed that he was having adverse reactions to dairy products. At this point, his doctor was beginning to notice a distinct leveling off in his growth, so she suggested having him drink Pediasure for some extra nutrition. However, he didn’t handle it well, and although he would eat yogurt, he would always get sick afterwards. One evening, while eating at Chick-fil-a (our favorite fast food place, hands down), he couldn’t take it anymore. After drinking his Pediasure, he projectile vomited across the table. Michelle said, “That’s it, we are taking him to the hospital.”
We dropped the girls off at my mom’s house and headed to Riley Children’s Hospital. We love them, by the way, and I will probably write more about them in another post. We didn’t know what to expect, but we ended up being there for about 4 days with him. They ran tests, did an endoscopy, asked us a flobbity-jillion questions… all of which brought us to the diagnosis: eosinophilic esophagitis.
I like to think that I’m a smart person. I mean, I’m no doctor, but I’ve got a basic idea of how things work. This, though, was new to me. As it turns out, it’s new to a lot of people. It’s a relatively rare disease. What does this mean, we wondered. It turns out there are different types of white blood cells in your body. There is one kind in particular that we all have, called “eosinophils.” They do not belong in your digestive system. Apparently the ones in Reese’s body skipped that day of their training.
His esophagus was loaded with them. And they saw the food he was eating as the enemy (yet another day of training they must have skipped). So when he has milk or yogurt, his immune system goes into attack mode. They don’t just attack the food, though. They go full-on Apocalypse Now on everything, including the esophagus itself. In fact, the eosinophils in his body mount up and man their cannons anytime he eats dairy products, soy protein of any kind, eggs (plus his already diagnosed egg allergy), nuts, peanuts, fish, or shellfish. In fact, the only one of the “Top 8” most common allergens he can have is wheat. So we avoid them, along with a daily Nexium to control the acid that the eosinophils thrive on. He gets the bulk of his nutrition via an “elemental” formula (built of individual amino acids rather than complete proteins – designed specifically for food allergies and other such things), and we try to coax him to eat whatever he can.
Fast forward almost a year. I’m making cookies, trying to make sure they are safe for Reese, swapping eggs for a replacer product, swapping dairy for coconut milk, swapping regular chocolate chips for something dairy-free, when I had a thought. I know there have to be other resources (blogs, sites, etc) where people share EOE-safe recipes and ideas, but I haven’t seen many, and I’ve never seen one from the dad’s point-of-view. So I wanted to see if sharing my ideas could be a help to anyone.
So this is Reese. This little tiny bundle of non-stop motion and adventure is why I’m doing this. Because he can’t have a cupcake like the other kids. Because trick-or-treating for him is a minefield of potential harm. Because EOE families can feel like they are all alone in the world, like no one understands, like no one even knows enough to care. Because he is representative of so many kids and families who are trying to sort out what this rare and newly discovered disease is all about.
This is Reese. And this is us. We are an EOE family, just trying to figure it all out.
For more information about EOE, please check out apfed.org.