How Oral Immunotherapy Changed Everything
"I am super grateful for having an opportunity to access this treatment and to be able to experience its success.”
Guest post by Teen Advisory Group member Jake Kaplan
One hot summer day, I was 11 years old and hungry for some mint chocolate chip ice cream. My friends and I sprinted across town to the ice cream parlor, while our parents walked behind at a leisurely pace. Gasping for air as we reached the door, I was third in line to order. I scanned the shop for a soft-serve machine, since scooped ice cream almost always comes with the risk of cross-contamination, but I did not see one. My heart sank, and I desperately examined the ice cream freezer, searching for what flavors I could choose. But there, in the back right corner, sat a tub of butter pecan ice cream. I was crestfallen because I could not enjoy ice cream with my friends. The employee there gave me a waffle cone, so while all my friends were eating their ice cream, I felt embarrassed with my plain cone.
I have constantly faced the challenges of food allergies at school, camp, hanging out with friends, or even at home. Luckily, I had never needed to use an EpiPen, although I have had a few allergic reactions. My mom has always been a great help in keeping me safe and avoiding the allergens in foods, and with her assistance, we discovered oral immunotherapy (OIT). OIT is a revolutionary form of food allergy treatment that changed everything. It involves eating a small amount of the tree nuts in powder form until I gradually build up a tolerance to eat full nuts. Only some of my tree nut allergies qualified for OIT: cashews, pecans, and almonds.
The first appointment was nerve-wracking, but it was the start of something that changed my eating habits entirely. In my seat, I waited patiently, but it felt like an eternity before that knocking sound came. The doctor came in and gave us plastic cups with a barely noticeable amount of powder. I mixed it with some chocolate pudding, ate it, and waited an hour before I was allowed to leave. I showed no reaction, and aside from a little hive, neither did any of my siblings. Every two weeks for nearly a year, we drove 40 minutes away to increase the dose, and before I knew it, I was eating entire nuts. On top of school and varying schedules with my siblings, it was challenging to find time every two weeks to go to the doctor. However, with the help of my mom, we dedicated countless hours to this process and made it work. Every day for two years I had some dose of tree nuts. This helped me become more responsible. My siblings and I have had different responses to OIT, which causes us to have different instructions on how often we need to take our doses. My allergies have remained the most severe, resulting in me dosing the most frequently.
After an extended period, we started taking entire nuts for the treatment, and we were considered “bite-safe.” Bite-safe is the term used to signify that we can eat foods that may contain the allergen and that we do not have to worry about cross-contamination. Immediately after the doctor called to tell us that we were bite-safe, I went to the same ice cream parlor in town and got my mint chocolate chip ice cream. I did not need to ask them for a scoop from the back or to wash the scooper; I ordered like a normal kid. This day was pivotal in my life, as I realized that my tree nut allergies would no longer limit me.
Before, I could not eat a cup of tree nuts, nor would I want to, but now I could. I knew this treatment worked and it changed my life. I started OIT for sesame seeds around that time, and the process was the same. For the first few months, we needed to see the doctor every two weeks in case of a reaction, but after then, it became less of a commitment. Every day for about another year, I ate about two thousand sesame seeds and nine nuts like in the picture. I never enjoyed taking my doses of these foods, but I knew I would appreciate it later.
This lengthy process involved more than eating the food. To measure how my body's reaction to certain allergens changed, annual blood work is needed. Blood work allows my doctor to see how the different levels of severity for allergens have changed, and based on that, he can instruct me to take my dose every other day or every week. To be able to dose less frequently, you must be on the highest dose for a year or so, but these changes depend upon the person. I reached this level and became bite-safe with sesame in addition to the tree nuts and have progressed from there. My siblings and I have all shown significant improvement in our blood work, so we have moved on from taking doses every day.
Becoming bite-safe with sesame was monumental in my life because it opened new doors in the types of food I could eat. Nuts are typically in desserts, while sesame exists in different types of cuisine like Middle Eastern and Asian. Recently, I went on a trip to Israel that was delayed until I became bite-safe with sesame. Waiting to travel until last year allowed me to try and enjoy the new foods without the fear of an allergic reaction. Similarly, I have been able to eat hibachi and other types of Asian cuisines that I would normally avoid. Another positive effect of OIT is that many of my other allergies have decreased in severity as well. With the help of OIT, I tried seafood for the first time, and I hope to try more foods in the future. I am super grateful for having an opportunity to access this treatment and to be able to experience its success. It took a lot of dedication and responsibility, and I appreciate all the help from my mom over these years.