We've been getting SO many questions about Oscar recently that I thought I'd do a little FAQ about his EOE.
Q: What is EOE? A: EOE stands for eosinophilic esophagitis. In Lauren Ries terms it means that the inside of his esophagus is allergic to a major allergen (dairy, soy, wheat, gluten, nuts, etc.). When he eats foods that contain even small traces of the allergen he's allergic to it causes his esophagus to swell. The swelling of the esophagus leads to discomfort, vomiting, and if left untreated can lead to a ton of really bad scenarios.
Q: How do you figure out what allergen causes Oscar's EOE? A: Unfortunately, the only way for us to know how Oscar's EOE is doing is to put him under anesthesia and perform an endoscopy where his GI doctor is able to biopsy tissue from his esophagus. Currently, allergy tests don't provide any indication of his esophagus' reaction to certain foods, so that's not an option for testing. We also can't just allergy test his esophagus. Instead, we have to rely on diet elimination and eliminating the different allergens from his diet to determine how his esophagus reacts to determine if that allergen is the cause. The tricky part is there are seven major allergens and it could be any combination of them that causes his EOE.
Q: What allergen is Oscar allergic to? A: In short, we still don't know. Thus far, we've given up dairy & his latest scope showed that removing dairy did not treat his EOE. Our next step is to remove any of the possible allergens that we know he's consumed in the last few months and see if we can get him to have a clear scope. Once we can figure out a combination that removes the EOE we can then start to add allergens back in one at a time to see if he has a reaction.
Q: Why not just keep him on medicine if you know it works? A: This is a great question and something Mike and I still struggle with. First, Oscar has been very vocal about his dislike for the medicine and his desire to not take it. So we'd like to respect his wishes since it's his body. Second, long term, having him be on a high dose of steroids that he takes orally (that aren't meant to be taken orally) isn't great. As he gets older his doses would need to increase and the side effects aren't awesome. Third, if we think diet elimination is something we want to pursue this is the age in which to do it. Based on our doctor's recommendations, the older the child is the harder the diet change is, especially, in kids with EOE. Unlike someone who has a nut allergy, Oscar does not have an instant reaction when he eats one of the allergens he's allergic to. It's a slow build up that over time impacts him greatly. Without the instant reaction, he has less of a "bad things happen when I eat that" reaction.
Q: What does his surgery consist of? A: Surgeries thus far have been pretty low key. Typically, we show up to Day Surgery at Children's 90 minutes before surgery. They will bring us back to a prep room, check him in, get him changed and then about 30 minutes before he goes back they give him some "silly meds" so that he doesn't remember leaving us. He gets goofy, we have a good laugh, the doctors come say hi & then take him back. The surgery itself is similar to any adult getting a scope done of their esophagus or stomach, just all of the equipment is intended for a children. All in all he's away from us for roughly 30 minutes. Post surgery they monitor him until he wakes up, typically they bring us back before he wakes, then they give him a couple of popsicles, make sure his vitals are good and then we are off on our way. We're very much aware of the risks of putting anyone under anesthesia and we're thankful that each time we've done the procedure that they've gone smoothly and we've been able to leave Children's with Oscar in tow. We know not everyone is as lucky.
Q: How many surgeries will Oscar need?
A: Not sure. When we started this journey we thought we'd only do two. The first to confirm the EOE and the second to confirm the medicine was working. We had no intention of pursing the diet elimination. We're sort of letting Oscar guide us on what he wants and what he's comfortable with. If he said he wanted to stay on the medicine and not try any more diets we'd definitely take a step back for a bit. Since he's still wanting to move forward we'll likely pursue at least one more diet elimination before evaluating next steps.
Q: What does the long term look like for EOE, will he outgrow it? A: In short, no, he won't outgrow EOE. Unfortunately, it is something he'll have forever. With that said, we're very optimistic about future treatment plans. We know Children's is getting new technology in the coming months that would allow us to scope him without putting him under anesthesia which is exciting.
Q: How does the EOE cause food aversions? A: When he was learning to eat there were certain foods that caused him a lot of discomfort and certain foods that didn't. Subconsciously, he learned to tolerate certain foods & then slowly stopped wanting to try new foods out of fear that they would only increase the discomfort. Overcoming this was one of the most challenging parts of EOE and something we still struggle with in some form today.
Q: My child is friends with Oscar (or someone else with EOE) do I need to make sure I have food available that he can have?
A: No. While we greatly appreciate more than we'll ever be able to put into words people accommodating Oscar's dietary needs, we don't by any means expect it. One of the hardest parts of this whole process is Oscar's realization of what he can no longer have. Currently, the list of no gos includes cake, pizza, mac and cheese, basically anything amazing that's served at a birthday party. Does that make Oscar sad? 100%. Will he cry? Probably. But this is his thing & it's not going away so part of learning to deal with EOE is learning to deal with this new reality. So if you invite Oscar over for a play date or for a birthday party (obviously post Covid) please know that he'll be beyond excited to attend and that he'll likely show up with his own meal
These are the most common questions we get. If you have anymore please let us know. We're happy to answer!