Oscar's Journey with EOE.
A few years ago Oscar was diagnosed with EOE, also known as eosinophilic esophagitis.
So many people have asked questions lately and wanting to know about our experience, so I figured we'd share it. Please know that this is our experience with EOE. By no means are we the experts and by no means is our path the right/only path. We know that other doctors may treat other patients with EOE completely different. We also know that others' journeys with EOE may look completely different. Again, this is our journey. Also, do I need to state the obvious, that I'm not a medical expert? Please, go see a doctor if you think you or someone you love may have EOE. Okay, enough with the disclaimers..
Oscar has been a puker for as long as I can remember. We moved to Charlotte right after he turned one and the puking started shortly after we arrived. Mike would take Oliver and Oscar to the Chick-fil-a at the South Park Mall food court and before Oscar was even completely finished with his kids meal he'd be puking it up. It just became the thing he did, so as you're unpacking the meal you'd always hand the empty kids meal bag to Oscar so he could throw up in it. We just assumed he ate too fast, because once he was done puking he always went back to eating.
When Oscar would get a cold he would always throw up. He would start coughing and then boom. He'd puke. Again, it just became the normal. When he'd get really sick he'd also always have a hard time breathing and ultimately end up having to use a nebulizer multiple times a day. Oliver had asthma so we chalked it up to that.
When we moved back to Sheboygan (Oscar was just turning 3) our pediatrician in Sheboygan decided enough was enough. Both of the boys were struggling with asthma and she wanted to get it under control. Oliver was easy, did an allergy test, put him on a few meds and he was good to go. Oscar was a little more difficult. As we continued to work to find a fix, we noticed he starting throwing up more and he stopped gaining weight, in fact he started to lose weight.
The throwing up just wasn't when he was sick, it was a couple of times a week with no rhyme or reason. We would be in the middle of dinner and he'd just get up and go to the bathroom, throw up, and then come back. It was also becoming harder and harder to get him to eat. He was only eating like six things and would completely lose it if we tried to get him to eat something else. Dinner time was a war zone and hamburger buns (aka bun sandwiches) were a food group.
At his four year checkup our pediatrician put it all out there. He was losing weight, throwing up more, and his diet was terrible. She was concerned and she was recommending that we go to Children's Hospital of Wisconsin in Milwaukee and be seen by a GI expert.
Children's had always been such a doomsday place for us. In our minds, that's where you go when there is something seriously wrong with your child. I was in complete panic mode. I didn't want to go there, it meant we had a kid with a serious problem. But we did, we trusted our pediatrician and we made the appointment.
We met our GI doctor who within five minutes said, oh he definitely has EOE. You know like it's totally common knowledge what EOE is. Mike's sitting there nodding his head as the doctor talks, I'm trying to take notes on my iPhone. Oscar is screwing around on the table.
He continues telling us all of the different treatment plans and overwhelmed doesn't even begin to describe the feeling we had. Strong steroids, diet elimination, multiple surgeries. I couldn't type fast enough, I couldn't think of enough questions. I didn't even know where to begin. So we made plans to schedule his first scope (so we could confirm the diagnosis) & agreed we would develop a game plan once we had the official results.
As he left the room, he stopped and turned and looked at Mike and I. He said I need you to promise me that you won't google EOE. At first I was like, Huh?! Of course I'm going to google EOE. I am a frequent WebMD symptom checker, you cannot tell me not to google something. I google everything. He went on to explain the amount of inaccuracies that there are about EOE out on the web (I feel like that could go for everything) and that he wanted to be our expert and that if we had questions, concerns, needed more information that he wanted us to go to him so that we were always on the same page. He did provide us with three websites so we could learn more, but to this day I have never googled EOE.
Now I know some of you would be like no way is my doctor telling me what I can and cannot look at. Honestly, for most things, I would probably be in the same boat as you, but the one thing I've learned over the years is that I cannot be the expert at everything for my children. So we have to surround our family with people who are the experts and who can help guide us and help us make the absolute best decisions.
EOE is a fairly new disease, and as I started sharing a bit early on I quickly learned that everyone treats it differently, everyone handles it differently, so in order to provide Oscar with the BEST care, we needed to be 100% aligned with our team at Children's. Two years later and I've still never googled EOE.
Curious what EOE is? In Lauren Ries terms, it means that Oscar's esophagus is allergic to a major allergen (dairy, wheat, soy, etc.) and that when he eats that allergen it causes his esophagus to swell. That swelling is incredibly uncomfortable, causing puking and left untreated can lead to a myriad of terrible things.
Unfortunately, the only way to test for EOE is to the biopsy tissue in his esophagus. This allergy won't show up on any standard allergy test, it can only be seen with a scope.
Oscar had his first scope in December of 2018. A few days after Christmas. It confirmed exactly what we thought, he does in fact have EOE. The first step of treatment for us was to get it under control. So leaving the hospital that day, Oscar was put on two medicines, one is an acid reducer and one is a steroid that is normally put into an inhaler or nebulizer. Instead of inhaling the steroid, Oscar swallows it with a tablespoon of maple syrup 2x a day.
The following April we went back and did another scope. The good news was that the medicine was working and his EOE was under control. The negative was that he was taking a strong steroid, orally, two times a day. Long term, it's just not a great option for his overall health.
Unfortunately, diet elimination is the only other treatment for EOE and Oscar's diet consisted of six things, which did not make him an ideal candidate. So our doctor signed us up for a feeding trial that involved us going to Children's bi-monthly for food trainings to work with Oscar on the psychology side of eating.
We started in May and met with our feeding team, which included a nutritionist, a psychologist, a speech therapist and our GI doctor. Y'all this visit was LIFE CHANGING. Dinner time had always been a struggle for us - someone was always crying, someone was always screaming, we had no rules, no boundaries, we fed them whatever we thought they would eat.
Within the first month we were given SO many tools that dinner time was actually enjoyable. The boys had boundaries, they had a 12-step method to trying new foods, they felt good, we felt good. Life was good. Over that summer we made leaps and bounds with Oscar's ability and willingness to try new foods. Now, don't get it twisted, he was still crazy picky, if you met him you would be like this is progress? But for the LONGEST time we were not only specific about the foods we ate but ALSO the brands that made them. When Costco changed the packaging on their deli turkey we stopped eating deli turkey for weeks.
We went back in October of 2019 for a check up and Oscar began voicing his dislike for his medicine, specifically the acid reducer. It has to be taken immediately in the morning before he eats and it often delays Oscar from being able to eat breakfast with his brothers. Somewhat trivial, but it was upsetting to Oscar. So we all agreed that we would try removing the acid reducer and seeing if the steroid on its own was enough to treat his EOE.
We returned to Children's in December of 2019 for his third scope. Unfortunately, the news wasn't great and it showed that in order to control his EOE Oscar needed to take both the steroid and the acid reducer. We agreed to meet in April to begin discussing diet elimination further.
Well we all know what happened next, the Pandemic. When we entered the pandemic we were four weeks from welcoming sweet Otis into our lives. We quickly went into what I affectionately call survival mode. You eat what you want when you want it. If you're hungry and you're willing to eat I'm not going to push you to eat something else.
Instead of traveling to Children's in April we did a virtual meeting with his GI doctor. Which honestly was a complete shit show. Neither Mike or I had showered, we were all in our pajamas, Mike was trying to feed Otis, Olsen was running around in his diaper screaming in the background, and Oscar was just being a goof. We all agreed that now was not the time to try anything new and that we should schedule some time in early-mid summer to regroup once things calmed down.
We met later in summer and Oscar continued to voice his displeasure with taking the medicine, so we all agreed to begin the process of eliminating dairy from Oscar's diet. Dairy is the biggest trigger of EOE and in over 50% of cases, dairy is the only trigger.
Y'all I thought it would be as simple as just cutting out milk, I was sorely mistaken. We started with Oscar and I going down to Children's for an hour seminar of how to spot dairy in foods, ways to remove it from your diet and all sorts of other things I never knew I had to consider. Did you know that some toothpaste contains the dairy protein in it?
We then met with his food psychologist and nutritionist who gave us some tips and tid bits. Typically, it seems like its a slow process of transitioning over a period of time, but that's not really how Oscar rolls. So we went on our family road trip in late September, decided it was our last hurrah, ate ALL of the dairy, and then completely removed it from Oscar's diet when we got back.
He did really well at first. He tried TONS of new things. New breads, yogurts, cheeses, etc. We found lots of dairy free options that he liked.
A couple weeks later we went back and met with his nutritionist and food psychologist. They were thrilled with the progress he had made. He had gone completely dairy free and he had maintained his weight. It was huge progress for us and following the visit our doctor officially gave us the go ahead to stop taking his medicine.
Oscar was pumped about no more medicine, but he quickly started realizing the grass wasn't necessarily greener on the other side. He had to forego hot lunch at school (his school did offer to make dairy free meals for him which was amazing), his friends had to leave a seat between him and them empty at lunch in case someone spilt milk or yogurt so it didn't spill on Oscar's food, he couldn't enjoy all of the yummy treats people brought in for their special days.
All in all, he handled it incredibly well. And then time continued on and it started to get harder and harder. We'd go to a friends house and they'd have pizza and cake and he couldn't enjoy it. Even though he knew it would be there and we had packed his own special meal. As we got closer to our scope I noticed him regressing a bit. His diet was getting smaller and smaller, his willingness to try new foods had completely disappeared and he was becoming more emotional and irritable.
So this brings us to current day. Yesterday, we returned to Children's for his fourth scope. The news wasn't great. Dairy free isn't working. His EOE is back. So what's next?
Our current plan is we're back on the meds. We need to stabilize the EOE and get him feeling better. Truthfully and selfishly we want him to be able to enjoy the holidays and eat whatever he wants. So last night on the way home we hit up Chick-fil-a & today he's having hot lunch at school (cheese pizza - wahoo!).
While we're taking this break we are doing a lot of research. First, we need to look at everything he was eating when he was dairy free. What other allergens are in those foods. We're thinking that his triggers may be dairy+soy+egg allergy, but it could also be gluten and/or wheat. So once we go through each food we'll send the ingredients to his doctor and determine what we're going to eliminate next. The next elimination will be a big one, likely anything we think could be an allergen. We need to get him to a place where we can remove all the allergens & show that the EOE is cleared. Once we get to that point we can then try and add foods back in and see if anything changes.
Lots of researching. Soy seems to be the biggest challenge for us. It's legit in EVERYTHING. The gluten free/dairy free/ allergy free items all seem to have soy in them. Eggs are also in a ton of stuff. So I'm trying to research recipes of things that I can make myself that are clear of all of the allergens we are trying to avoid. For example, the bread he eats has both soy and eggs in it, so I'm looking for breads that I can make for him that don't have any of those items in them.
My goal is to find enough foods that he can try while he's still on his medicine and feeling good that when we go off of it again in a few weeks he's got enough options to support him. I'll be starting with the basics and then adding in things as we go, as we both get comfortable.
The other thing we'll be doing this time, is the entire family will be more active in Oscar's diet. Previously, we were making Oscar meals and then everyone else was doing something else. While no one was eating McDonald's or getting pizza in front of him, it was definitely a bit isolating for him and he definitely voiced those concerns. So this time around we'll be doing more family dinners and everyone will be enjoying the everything-free items.
There are some things I won't remove from our other kids diets, like milk. Please don't think I'm risking the health of my other kids to satisfy the feelings of Oscar.
So that's where we're at. We're continuing to pivot and adapt.
I'm going to do a whole frequently asked questions post as well. This post ended up being much longer than I anticipated and I want to give people the option to just read the FAQs if they don't want to get into the details. Thanks for all of your love and support. We all appreciate it, but especially Oscar.
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