We started our OIT (oral immunotherapy) journey with milk. We chose milk because it seemed to be the most limiting and deadly allergen for my son at the time. He had had several anaphylactic reactions to milk in the past and when looking toward food freedom, we felt milk would open a lot of new foods for Noah.
At the time there were no milk OIT providers in our state, so we did our research and chose a state we could travel to with relative ease. Dallas seemed like a good fit for us. The office we went to had been offering milk OIT for over a decade, and they had a long list of OIT graduates which meant they had expertise and experience. Dallas was a quick 1.5 hour flight from Denver and we could fly Southwest Airlines, a wonderful and inexpensive airline.
We went for a consult in July of 2016 when Noah was 5-years-old. After an evaluation, testing, and discussion with the doctor, Noah was deemed a great candidate for OIT and we left feeling ecstatic that hope was within our grip.
On September 1, 2016, we went back for our first day of OIT. The first day is an escalation day where you start with minuscule doses and escalate to your starting dose. We spent about 6 hours at the office and I held my breath with each dose waiting to see a reaction. I was convinced Noah would have a reaction within the first dose or two and we would leave knowing that we had tried, but he was just too allergic for OIT to work for him. I was shocked to see how very wrong I had been. He passed with flying colors! We left with a bottle of diluted milk and instructions to take each dose at home. He was on a twice a day dosing schedule, which made him ready to updose each 7 days. Updosing is when you go to the office and take the next dose, which is slightly larger than the one he/she is already taking. It is a slow, increasing process that allows the allergen to “fly under the radar” of the immune system so it doesn’t trigger a reaction. Eventually, the body being completely fooled will tolerate one’s allergen free from response. You can read more about OIT specifics here.
At first Noah’s dose was a small amount, and he took it very well with little protest. We flew back every Tuesday to the office for our updose. We woke up at 3 a.m., took the 6 a.m. flight, flew to Dallas and caught a Lyft or Uber to the office, and were updosing by 9:30 or 10:00. His updoses always went smoothly. A few times he would have some mild itching on his tongue that subsided with drinking water. Sometimes he had a hive or blotchy spot on his face which again went away quickly. We took our dose, waited the 45 minutes in the patient waiting room, and then took an Uber to lunch before heading back to the airport. I planned the flight home on the 1:45 or 2 pm flight. It was the cheaper fare, but also because it gave us a buffer zone of about four hours from Noah taking his updose until we were on the plane. I had a fear of him having a reaction in the air, but he never, ever did. We arrived back home around 5 pm and were absolutely spent.
We did this every week for 24 updoses. Yes, that is right… 24. It was a huge commitment. Both physically, emotionally, spiritually, and financially, but one that I am so thankful we did. I would do it over again in a heartbeat!
He graduated milk OIT on April 4, 2017. It took us approximately 7 months to complete with weekly updoses and a few weeks we took off around holidays.
Upon his graduation we spent weeks, okay, maybe a month or more, enjoying all things dairy. We ate pizza, donuts, ice cream, milkshakes, chocolates, etc. It was amazing. I was able to watch Noah eat a snack with his soccer team, stay the night with Grandma and Grandpa with a little less fear, play at friend’s houses without my direct supervision. The list of freedoms was overwhelming. I beamed with gratitude and pride. He did it! We did it! His body had overcome what had once tried to kill him.
He still has to take his maintenance dose of milk daily. He doesn’t love drinking a cup of milk, and we were thrilled when his doctor allowed us to decrease his maintenance dose to half a cup daily. He free eats dairy like it is his job. In fact, his favorite foods have dairy in them. He loves yogurt, smoothies, pizza, mac and cheese, and lasagna. Who doesn’t?
I am so thankful we started with dairy, as it did open a lot of foods to Noah. However, we did notice that he was slightly limited in the new foods he could have because of his egg allergy. A large number of backed foods contain both dairy and egg. Our next allergen to tackle seemed to be choosing us. We knew that it was only a matter of time before we started OIT for egg. It only took us a few weeks to decide that we were ready to get back on the wagon and take on egg, although this time, we found an OIT provider who was only an hour drive from Denver. You can read about his egg journey here.
OIT has changed Noah’s life. It has changed our lives. It has given him a more full, non-limiting, and safe life. I will continue to shout it from the rooftops that OIT works! Don’t settle for a life of fear, exclusion, and avoidance when you don’t have to. It is worth the drive, the flights, the time, the energy, the money. OIT is worth it all!
