Egg OIT Graduate
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Riley graduated from egg Oral Immunotherapy (OIT) on July 9th. His first egg challenge was actually on June 25th, when Riley ate his first scrambled egg in the office. He took his normal dose of egg white in the morning and then ate a whole scrambled egg in the office under the doctor’s supervision. It was so strange to see him eating an egg, something he couldn’t even touch without a reaction just a few months ago. I could see his body was tense with nervous excitement as he took his first bites. No reaction. Not even an itchy mouth. I wanted to be more excited than I was, but it was so unreal to me. I felt like I was in some kind of a dream. After an hour of observation, he was doing great. I thought I would be in tears of joy that day, but I think I was in disbelief.
Not Quite Done
The doctor told us that if we wanted, we had the option of going to a lower dose of egg white for his maintenance dose (yes – he has to drink egg white every morning). He would have to take the lower dose for a week and then challenge by eating a scrambled egg in addition to his dose again. Riley doesn’t like drinking egg white, so he said he wanted to try the lower dose. For us it would be nearly 2 weeks before the challenge since we were going on vacation the following week.
I tried to be positive and supportive even though I was quite let down that we couldn’t start free eating eggs, especially on our vacation the following week. I had to remember it was ultimately up to him, and that I shouldn’t be hasty or overly anxious after the last eight months of work. What was 2 more weeks after 12 years of not eating eggs?
I was a confused about how to communicate this to our friends and family who were expecting that a passed egg challenge meant Riley could free eat eggs. Yes, he passed, but no he couldn’t eat eggs. I just didn’t say anything to anyone unless they asked. I was confused about why I hadn’t been told more about this option of going to a lower dose before our egg challenge. It sounded like it was a recent option the doctor had made available because patients had been responding well to a lower maintenance dose. But it is all about expectations. Had I been expecting to continue complete avoidance in order to do a second egg challenge in two weeks, maybe I wouldn’t have been so numb the day we passed our first challenge.
We went on vacation and still avoided eggs but didn’t worry about cross contamination. Extended family members made and ate eggs for breakfast and for the first time on vacation, we weren’t stressed about hand washing, dishes, sponges and what Riley touched. Riley wasn’t eating the eggs, but that was fine. We weren’t worried about what other people were eating. OIT was already paying off. Honestly, it is worth it for that peace of mind alone. Riley said he couldn’t wait until he could eat eggs, because he really liked the scrambled eggs.
Second Egg Challenge
After our vacation, about 2 weeks later, we challenged egg again and passed with flying colors. This time I texted family and friends and posted our success on Instagram. It was for real. We were relieved and excited.
But we still had to be somewhat careful, it wasn’t a complete green flag. We were told not to over-do it. We were told that he should only have an extra serving or two per day and that he should not eat eggs within an hour before or after his dose. He could eat a scrambled egg two days a week for his dose, but not on consecutive days. If he ate a lot of eggs, he needed to observe a rest period afterward. It didn’t apply to eggs baked in, but if he ate straight up eggs or a salad with a lot of mayo, he needed to be careful not to get his heart rate or body temperature up too high for 2 hours afterward. This wasn’t exactly “free eating” in my mind, but I tried to remind myself that it should get less restrictive as time passed and that any reactions that he might have would likely be small. He was a new graduate and the doctor was trying not to overwhelm his system. I have to confess, it was a bit overwhelming to think about all of that. It was a lot of rules and restrictions floating around in my head. I tried not to feel discouraged. I knew we would have to see how it would play out at home and with time.
First Request – A Donut
I asked Riley what he wanted to eat after he passed his egg challenge and he said donuts. When we originally started OIT and the doctor asked him what he wanted to eat when he was done, and he said donuts that day too. Obviously donuts were a big deal to him. Donuts have always been the one food that seemed to get to him when everyone else has them at soccer games or parties. I was excited to have a donut ready for him after he passed the challenge.
It was actually quite hard to find a donut he could eat. Most donuts either have milk and/or risk tree nut cross contamination. A lot of food (especially sweets) would still be unavailable until we finished at least milk OIT. Egg OIT was opening some doors but we would have to do some looking to find where they were. It made me even more eager to finish milk because I knew it was going to open up countless food options.
Thankfully, Riley has been able to eat baked milk for years, so I was lucky that baked milk was at least an extra edge in my favor. Any frosted donut would have milk in the frosting that wasn’t cooked, so donuts with a milk free icing or glaze were the only possibilities. I called multiple donut shops and eventually found that our local Krispy Kreme did not have nuts at their facility and the glazed donuts would work. My husband drove to Krispee Kreme early the morning after Riley’s 2nd egg challenge and Riley had his first Krispee Kreme donut.
Benefits of Egg OIT
While graduating egg OIT did not equal complete and immediate food freedom, it has still changed our lives for the better. We went to a family reunion the week after he graduated and we didn’t have to tell everyone it needed to be an egg-free event. Toddlers ate eggs and we weren’t worried that it was all over their hands, the table and the floors. Riley ate a scrambled egg instead of liquid egg white for his dose on a couple of the mornings and loved it. We ordered pizza at the reunion and we didn’t even ask if the crust had egg in it. We just ordered a pizza without cheese.
The moment that hit me the most was one day, less than a week after graduation, when we were driving home from the pool. It was too late to make dinner, so I suggested we go out to eat (which we rarely do as a family) and I pulled into a Chik-Fil-A. When we walked in, I realized that Riley could eat almost anything on the menu as long as it didn’t have cheese. Any of the buns would be fine with the milk baked in, mayo was not a problem, breaded chicken could have egg in it, and even their Chik-Fil-A sauce was fine. A flood of relief and joy hit me as I looked at the menu with him. When we all sat down with our food, his brother and sister were alive with excitement grabbing Chik-Fil-A sauce and mayo packets for him to try. They even mixed ketchup and mayo together so he could try “fry sauce” with his fries. He didn’t look at our food and wonder what it tasted like, or look longingly at the sauces. He tried them all and we all ate together. We ate without a stomach ache, an itchy mouth, swollen lips, hives, and best of all without the worry, stress or anxiety that always happen when we put our food in someone else’s hands. Every day of OIT was worth it right then in that moment we shared together. I felt tears welling up in my eyes. I came home and wrote in my journal about how happy I was that night. The tears started pouring like rain. I’m sure it was a let down of years of tension and stress all at once. You don’t realize how much you have to hold it together as a food allergy mom. You can never let your guard down. I felt like I had just run a marathon and crossed the finish line. OIT was working. It was changing our lives for the better and this was just the beginning.