Oral Immunotherapy (OIT) Teen Q&A
Teen Advisory Group Members (TAG) Himal Bamzai-Wokhlu, Blythe Bath, Sarah Fleming, Ally Kalishman, and Maddie Waldie answer questions about their experiences Oral Immunotherapy.
Note: Decisions about whether and which food allergy treatments to pursue are highly individual and should be discussed with your doctor. If you are interested in pursuing treatments, consult with your board-certified allergist to learn more about risks, rewards and treatment options.
Himal: From infanthood, my allergies dictated much more than the foods I could eat. As someone with severe reactions, restaurants, airplanes, and school-lunch tables were all dangerous. The idea of desensitization from home had always been on my parents' minds. Before even beginning OIT, my parents would try to eat more nuts around me so that I would be less reactive to "nutty" environments. I tried baked egg for the first time when I ate half a nilla wafer! During this time (2015), my family and I started getting more introduced to the online food allergy community. That year, we participated in FARE's Teal Pumpkin Project. We became more in touch with allergy Facebook groups that were talking about this treatment for kids like me: OIT.
Ally: I actually found out about OIT through a FARE conference I attended in 2016! I had been going to the annual FARE conference for several years, but this is the first year they really started to talk about the potential for new treatments. One of the discussions mom attended talked specifically about OIT and it really piqued her interest, so when we got home she called my allergist to tell him about it. He said that the practice had actually just started doing OIT treatment, and they didn’t want to advertise it yet, but I would be the first person in line. I owe a lot to FARE not just for giving more a platform to share my story and connect with other allergic people, but for spreading awareness about OIT for people like me. And the rest is history!
Sarah: I found out about OIT when my mom was advocating labeling awareness for food allergies in Washington DC. While participating in “Food Allergen Advisory Labeling Committee of Northeast Ohio” she noticed her roommate drinking Kool-aid from a syringe. Curiosity peaked and her roommate explained what OIT was and why she was doing it. I owe not worrying about what I eat every day partially to her. If she had not explained what OIT was to my mother, then I never would have done OIT many years ago.
Maddie: For the longest time, the best way to manage my food allergies was avoidance. Officially diagnosed with food allergies at 3 months old, I grew used to bringing food and my emergency medications with me wherever I went and being extremely careful about reading ingredients and avoiding cross-contact. Over the past few years, my allergen sensitivities progressed to airborne contact. I started wearing gloves in public, going to school for half days, and more. But, last year, after dozens of reactions at school, four of which were nearly fatal, I realized things needed to change. My doctors recommended multi-allergen Oral Immunotherapy with omalizumab to almond, Brazil nut, cashew, hazelnut, peanut, pistachio, and walnut (which covers pecan), in combination with Omalizumab for me, and I started it in May 2019. Before starting, of course, my doctors and I went over the risks and possibilities of reactions. But, I decided that the benefits outweighed the risks, as the OIT could dramatically improve the quality of my life.
Ally: Like Maddie said, the idea that OIT could improve my quality of life was attractive to me. My parents always taught me to go after what I want and that I could conquer any challenge if I committed myself (I know it sounds cheesy, but I truly believe it!) And for me, anything I could do to alleviate the constant anxiety I had about having a reaction was worth it. Of course, I had to sacrifice not only hours out of my schedule but my sense of control by putting my faith in the hands of my allergist. This is a scary premise, considering I had been told to avoid these foods all my life and now I was being told to eat them! But once I got to know the process and the risks, I decided that it was worth it. OIT was ultimately my decision, but I knew from the start I was prepared to tackle any challenge ahead.
Sarah: As both Ally and Maddie said having an allergy caused many problems in my life, and hearing that OIT could solve those problems really piqued my interest. One of the main reasons I wanted to do OIT was for the possibilities it provided. I hoped to attend college and one day travel the world. Having an allergy prevented my family and me from traveling, because we would not be able to trust most of the food served. So for many years we rarely went anywhere. Attending a college far from home would also be a challenge. Having to deal with the stress from classes and a social life on top of watching everything I eat would be very challenging to do all by myself. Hearing that all of my worries might be washed away if only I gave up time to go to the doctors every week I was willing to sacrifice that time. Many times it was hard for me to drive for an hour to visit the doctor and cancel plans with my friends. I was only twelve and many of my friends did not understand. I knew it would all be worth it in the end, not only because it might help my allergy, but the challenges would make me stronger in the long run.
Maddie: While I discuss healthcare situations with my parents, I have always been the one to ultimately make big healthcare decisions. When I was about 9, I chose to pursue milk desensitization. Even though I was young, I wanted to do it and took an active role in the decision to participate. I was diligent and made sure I consumed everything I needed. I also decided to pursue multi-allergen OIT. After going to consultations, I considered all my options and opted to go with the most aggressive option of 7 allergens at once. I also made sure there were backup options, in case the one I chose didn't work out.
Blythe: When deciding important healthcare decisions with my parents and doctors, I was definitely the main voice. I started OIT at a young age, and chose to start with milk OIT rather than one of my other allergies such as eggs, peanuts, or tree-nuts. My doctors were originally concerned that such a young child might have difficulty articulating any symptoms, but I proved to be capable of communicating my needs. This definitely came in handy as I experienced several episodes of anaphylaxis during updoses and, later on, persistent GI symptoms. One year into my dairy OIT when I had reached nearly 5 mL of milk, I was diagnosed with EOE, and advised to halt the consumption of any allergens. Despite this, I did not want to lose the progress I had made. My parents and doctors were supportive of my decision, and came up with a plan to allow the continuation of my OIT while allowing the EOE to subside. I dropped to a much lower dose, and my symptoms improved. Today, nearly six years after I started dairy OIT, I am happy to say that my decision to continue was well worth it, as I have progressed to nearly 20 mL of milk. Although this is only 8% of the typical maintenance dose of one cup of milk, it does help protect me from cross-contact reactions, and I have noticed fewer accidental exposures when eating out. As you can see, your opinion and thoughts truly matter when undergoing OIT.
Blythe: I was diagnosed with severe food allergies to dairy, eggs, peanuts, and tree nuts when I was nine months old. I started OIT for dairy in 2015 when I was in fourth grade. At the time, few doctors offered OIT for patients who had multiple allergies, particularly patients who had severe allergies with anaphylaxis as well as co-existing asthma. Many OIT clinics were still in trial stages, and only accepted patients who met strict criteria. Because of this, my family had to travel from our home in Houston to Dallas (a four-hour drive away) to see a doctor who was willing to treat me. I traveled to Dallas once a week for my OIT. The OIT protocol with this doctor involved dosing twice a day with a four hour rest period after each dose, and updoses each week. Right off the bat, things did not go smoothly. I experienced symptoms with my dose ranging from an itchy throat to a stomach ache to even full-blown anaphylaxis. I started updoseing more and more cautiously, but after about one year of OIT, when I reached close to a teaspoon of milk, I was having constant abdominal pain, and my symptoms became too severe to continue. I was tested for numerous conditions including celiac disease, GERD, and many others, and it was concluded that I had EOE, an inflammatory disease of the esophagus. The primary solution for EOE is to stop OIT entirely; however, I still wanted to pursue OIT rather than just quit, so my doctor decided to decrease my dose drastically. I dropped down to dosing once a day at a fraction of the small dose I had been on before. Luckily, my symptoms improved quickly, and after a few months, I was able to start updosing again at an extremely slow pace from home with the doctor’s oversight. By 2019, I had reached two teaspoons of milk which was HUGE progress for me. With this small “win” with dairy, we decided to go ahead and add in my other allergens of egg, peanut, and tree nut one at a time, and I have made slow progress with these allergens too. Today, nearly 6 years after I started OIT, I have not yet reached the halfway point of a full maintenance dose in any of my allergens. However, I have gained some protection from cross-contact, and I will continue to work towards a full maintenance dose.
Sarah: After hearing many allergen and OIT stories from others, I am very grateful for my experience. Having an allergy came very unexpected to me. Throughout my life, the only health problem I had was being lactose intolerant which I overcame without the help of a treatment plan. I first noticed my allergy to cashews and pistachios late one night when my dad brought home baklava from work. I had never had the desire to have baklava earlier in life for I had a hatred for any type of nut. After finishing one small slice my throat began to swell and become very itchy and tingly. I felt sick and eventually threw up many hours later. Luckily for me, that was the worst allergic reaction I have had to this day. I was diagnosed with my allergy and many years later found out about OIT. My treatment plan started as going to my allergist once a week every week for what seemed like forever. My treatment started small with me drinking an extremely small amount of cashews in Kool-Aid. After every time I went to get an updose I was extremely tired. I remember sleeping in the hour car ride home, and then sleeping even more once we returned back to my house. I was not tired during the week when taking the doses, but I had many restrictions after drinking the kool-aid which prevented me from doing much after dosages anyways. These restrictions made it hard for me to work around my busy schedule. Overall this taught me time management, for I had to work when I took the cashews around showers, lacrosse practices, and activities with friends or activities on vacation. Unlike the many other stories I have heard from others who completed OIT I never had any setbacks. Though I was not the first patient my allergist had to start OIT, I was the first to finish. As I slowly progressed without any setbacks, I became the “guinea pig” of the treatment plan. As my treatment went on my dosage of cashews went up and I reached a whole cashew. This was a huge milestone for me. The only issue I had with reaching this milestone was that I still hated eating nuts. Unlike others who have worse allergies than me, I have never been terribly afraid of cashews. Being the ‘guinea pig” I am, I decided to test my limits and drink cashew milk instead of eating cashews every day. This lead to my success. If anyone else does not like nuts but would like to try OIT, I highly recommend doing it. There are so many alternatives if you do not like the taste of nuts. When talking to my doctor we came up with the options of cashew milk, chocolate covered cashews, making smoothies out of cashews, ice cream with cashews, and so much more. I completed OIT last summer going into high school. Hearing the doctor say that I was finished taking cashews every single day made me so much happier than anyone could believe. Being the guinea pig it was unknown if my allergy could become worse again, so I still continue to drink my cashew milk once a week. Though technically I am still allergic to cashews, pistachios, and mangos it now does not have any effect on my life, and most days I forget that I once was not able to do many of the things I can do now. Going through OIT made me realize how strong I really am, and I highly recommend it to anyone who is debating whether to start OIT or not.
Maddie: I was used to leading a pretty normal life while remaining diligent to avoid my allergens, but then, everything changed. Gradually during my Sophomore year, I started experiencing more reactions at school. I spent the entire second semester with terrible stomach aches and by my Junior year, my sensitivity to my allergens had become much more severe. Dozens of mild reactions, and 4 nearly-fatal episodes of anaphylaxis during the first 6 months of my Junior year, despite careful precautions, was not how I envisioned this critical year of high school unfolding. Wearing gloves, eating in isolation, and half school days became my new "normal." I decided to pursue multi-allergen OIT to almond, brazil nut, cashew, hazelnut, peanut, pistachio, and walnut (which covers pecan) with Omalizumab. Deciding to pursue all seven nuts at once was a scary decision because at the time the most allergens my OIT clinic had been doing at one time was 5. The doctor explained that if I reacted badly, there was no way of knowing which allergen triggered the reaction since they would be consumed together. If I could not tolerate all 7, then another option was to split the nuts into two different groups. I could be desensitized to my worst allergens first, and then once I reached maintenance for those, start with the second group. Of course, the other option would be to do each nut start to finish, separately. That would take a very long time. Knowing that college was on the horizon and that I had summer to devote to the start of OIT, I chose to try all 7.
In order to start the OIT, I needed to begin Omalizumab injections several months before the first dose. I began injections just 5 days after the 4th nearly-fatal reaction, in February of 2019.
In May of 2019, I had my first dose of OIT - a moment that would change my life forever. During that appointment, I started with just 0.5 mg of each nut and worked my way up to slightly under 3mg of each nut protein. It looked like such a small amount, but it was the scariest thing in the world to me. Just being in the same room as someone eating pistachios could send me to the hospital, so how could I possibly eat this little bit of nuts? But, I took a bite of the dose (disguised in ice cream, of course) and started what would be a great adventure.
After the first appointment, I dosed at home and went every 2 weeks to the office for an increase in my dose. For the majority of my OIT, I was measuring out seven different nut flours with the use of a scale. Keeping track of seven different measurements every day was challenging, so I created a checklist for each day to indicate the scale measurement and keep track of dosing. In the beginning, it took a long time to measure doses, and it was a bit stressful because I wanted to get it right. Close to reaching my maintenance level dose, I gradually switched over to nuts, rather than flour. While this makes dosing less tedious, I still need to continue to weigh each dose on the scale because the nuts vary greatly in size, and I'm extremely sensitive to changes.
My OIT journey went slowly and carefully, and I had some setbacks along the way. Sometimes, I would have frequent mild reactions while taking my dose, while other times I had very few. Sometimes I had to do half doses because of environmental allergies, which ended up prolonging the next updose. Sometimes updoses had to be scheduled for longer than the normal two weeks because of reactions. At one point, I was weeks away from my maintenance dose when I had an anaphylactic reaction unrelated to my dose while traveling. I had to decrease my dose by about half, and it took a while to work back up to where I had been. I kept reminding myself it isn't a race, and not to compare myself to others. We paid attention to what my body could tolerate, and acted accordingly.
I was (and still am) very careful to follow all of the guidelines my doctor has put in place around taking my daily doses. Because of my sensitivity, I needed to allow even more than the "standard" rest period after my dose. I adjusted my schedule and routine to allow for a rest period prior to and after each dose. It was definitely challenging at times because I also do SLIT (Sublingual Immunotherapy) for my environmental allergies, and both doses need to be at completely different times during the day, and both require a rest period. For me, dosing SLIT in the morning, and OIT in the evening after dinner was how I made it work. I had to work with my different activities to get permission to leave early and work at home so that I could ensure dinner and my dose happened at the same time each day. Especially in the early days, I was extremely sensitive to any changes in routine.
In December, after almost 7 months of dosing, I reached my maintenance dose, just in time for my 18th birthday! Every day, I eat approximately 1 almond, 1/2 Brazil nut, 1 cashew, 1 hazelnut, 1 peanut, 2 pistachios, and 1/2 walnut. It’s so crazy eating this dose every day, knowing where I was a year ago.
The most exciting thing about my OIT journey is seeing how much my life has changed in a single year. I was able to return to school full time at the start of my senior year, stopped wearing gloves, could eat with my friends, and am protected from accidental cross-contact. I’m still super careful to avoid my allergens and not consume them outside my daily dose, and I do still experience some mild reactions to my maintenance dose, but in June of 2020, I celebrated my 6-month milestone of being on a maintenance dose! I am grateful to have experienced so many positive changes in my everyday life, thanks to OIT.
Himal: Although I've experienced the ups and downs of OIT, I'm currently in a significant trough. My reactivity to my typical allergens (eggs, nuts, fish) and to foods that have always been safe for me has seemed to increase. I've been having 3-4 reactions per week. While most of them are minor, three have escalated to the point where we needed to call an ambulance. In response to OIT-related GERD, we down-dosed all my allergens--leaving me at the same place I was two years ago. However, I have hope that my immune system will restore its strength. It has done it before. While this is a setback, I feel that I am much safer than I was before I began OIT. This experience has served as a reminder that no matter how far I go with OIT, ultimately, I am still allergic. From now on, I will be less cavalier in my food choices and treat my allergies more seriously.
Ally: My allergist always says that OIT is not a sprint, it’s a marathon. Between setbacks, severe reactions, and months of waking up early so I didn’t miss any school, OIT definitely taught me to be resilient. A lot of times, it was really hard to stay invested. The fear of having a reaction and my frustration when I was forced to regress to a lower dose made me consider quitting. But, I constantly reminded myself of the end goal and reassured myself the process would be worth it, which kept me motivated through the challenges. The best trick I learned throughout OIT, and a necessary coping skill, was the ability to listen to my body. Sometimes I would get so wrapped up in making it to the end of the process, that I wouldn't consider what was happening in the moment. During those times of frustration, I reminded myself that I would rather reach the end safely and listen to what my body was telling me than rush through something so important. This allowed me to keep calm during those rough periods and be okay with taking the time necessary to do this the right way. I realized throughout the OIT process that this was MY journey, and it was not going to be like anyone else’s or follow the exact protocol laid out for me. It was going to involve personal struggle, but also personal growth. And in the end, the reward was SO worth it!
Maddie: In December 2019, after almost 7 months of dosing, I reached my maintenance dose. Every day, I eat 1 almond, 1/2 Brazil nut, 1 cashew, 1 hazelnut, 1 peanut, 2 pistachios, and 1/2 walnut. OIT has helped me reach cross-contact, allowing me to return to school full day, stop wearing gloves, and ultimately lead a more normal life. Even though I eat my dose every day, I am still extremely allergic, and continue to take steps to keep myself safe. I am diligent in reading ingredients on labels, carry my emergency medications with me at all times, and take an active role in advocating for my safety at school, on airplanes, in restaurants, and in other places.
Ally: I have reached maintenance for dairy and egg (yay!!). For me, that means every day I am required to have 8 oz. of dairy and 1 full egg. Sometimes this can be hard to get in during the day, but I constantly remind myself how hard I’ve worked and that keeps me motivated. The thing that helped me the most was working the dosage into my schedule at a consistent time. For example, I like to have eggs as my breakfast so I can get that maintenance dose done for the day and then have my yogurt every afternoon as a snack. And as long as I have my maintenance dose, I can have as much dairy and eggs as I want the rest of the day!
Maddie: Food allergy treatments aren't a competition, and you shouldn't constantly compare yourself to other people undergoing treatments. Everyone's journey is different, and you should be proud of wherever you end up. :)
Blythe: My advice for teens who are looking into OIT is to be flexible with their goals. My initial goal when I started OIT for dairy was to be able to freely eat milk products in the typical 5-12 month duration. However, due to experiencing severe symptoms with each dose, EOE, and some episodes of anaphylaxis, my original plan was quickly derailed. I was advised to stop OIT, but I decided to continue OIT at a much slower pace. While the lack of progress was discouraging for me, I was committed to sticking with OIT and remaining optimistic, even when I had to change my goals. Today, six years into my OIT journey with dairy, I have reached 8% of the final, full, dosage, which is amazing progress for me. This is a reminder that there really is no “typical” or “average” OIT process, but to remain hopeful and dedicated throughout by focusing on all the small wins along the way! (My allergist used to tell me to look at the donut, not the hole.
Ally: I know it can be scary, challenging, emotional, messy, and so many other things. But the reward was so worth it for me. It truly changed my life for the better. I can now eat (nearly) anything I want without having to worry for my life, and if I had to go back and do it all over again, I would.