We knew the pros and cons when we started OIT (or oral immunotherapy- the process of desensitizing one to their allergenic food).
Pro: safe to eat anything, anywhere at anytime.
Con: might have to keep up a daily dose the rest of your life.
Pro: no more crying in the grocery store when you realize they started putting peanut flour in everything just so they could work around cross contamination labeling.
Con: illness may cause decrease or cessation of dosing temporarily in order to prevent an allergic reaction.
So, for the last two years since starting OIT, we have had had our fair share of skipped days and lowered dosing days and have, within a day or two, bumped right back to our last dosage amount. All of this without issue. That is, until the Evil, Spawned from Satan Himself, Stomach Virus of 2016. You heard me. That’s the name. Says so on the ER discharge papers. First, my 5 yr old daughter went down. She vomited for 24 hours straight before we got Zofran in her. In total, she was down for 6 days which is 5 days, 16 hours longer than any illness she ever had before.
Two days after she returned to normal, down went my son. Obviously we didn’t dose during the days he was vomiting or refusing food, but three days in, he seemed to be turning a corner. He hadn’t dosed in two days which wasn’t a big deal. Since he normally eats 3 tsp a day of chocolate peanut butter, his doctor suggested we start with 1 tsp. Everything was fine…for an hour and a half. Then he coughed a little. It wasn’t an alarming cough, but since he hadn’t coughed this whole illness, I slowly made my way to his room. He looked good. He coughed again. Interesting. I put the pulse oximeter on him. Oxygen 98. Fine. He coughed again. This time, he said, “It’s wrong. Don’t you hear how I’m breathing? It’s bad.” Whoah. Two puffs albuterol and the coughing ceased. Fuck.
I put a text in to our allergist and called the on-call who had me administer antihistamines. Our doctor then called and had me add a steroid. By now, hives were springing up and his eyelids were puffy and red. I checked in at an hour as requested by Dr. Jones and confided there were now hives up and down my son’s legs and on his back. More drugs. 4 hours later, his body was clear, though he was spinning like a helicopter from those damn steroids.
The next day, he was fairly sick again. Reaction explained: he just wasn’t well. We skipped dosing and tried again (with medication) and at a much smaller dosage. Two days of that went perfectly, though I kept putting him in bed with me at night so I could watch him breathe. There’s still plenty of crazy mom left in me. Day 3 of dosing we increased the amount slightly. An hour and a half after dosing, he started coughing. No hives this time, but his back had a patchy rash. More meds. We didn’t down-dose, but we did add medication prior to dosing the next day. He did great. No issues.
Listen, I spend a lot of time advocating for families with food allergies and promoting all the benefits we enjoy by having completed OIT. It sucks that much harder for me when a reaction occurs because isn’t just a reaction: it’s an experience I now must share with all those who I touted OIT’s safety and effectiveness to so many times. Here’s the thing, though…he has had 3 of these episodes, none of which required epinephrine, in the 27 months since we began desensitization. Unlike a random reaction from cross contamination or accidental ingestion, there’s no guesswork. I know why he’s coughing or why he has hives and I have a trusted doctor ready to guide me through the situation within minutes. Is it still scary? Hell, yeah. Would I do OIT again if I had to rewind the last two years, knowing what I know now? Hell, yeah.
We have had 362 reaction-free days in the last year. Days I didn’t read labels, didn’t say no to birthday parties, packed for trips without lugging a whole suitcase of safe food and days I sent my son to a friend’s or ate at a restaurant without interrogating someone about food ingredients. If it takes us a week or a month to get back to 3 tsp of peanut butter, our quality of life still surpasses any day 3 years ago.