BLOG: OIT Mommy: An oral immunotherapy story; by Heidi and C

There are over 50 OIT family blogs published in our Research & Learn library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey. Among our community we have an ongoing saying that “OIT is boring.” While some people have bumpy rides for the rest of us, we eat the dose, and then…nothing happens. “Lather, rinse, repeat.”  This is a boring post about boring!


OIT is Boring! First Two Months of Peanut Oral Immunotherapy – OIT Mommy

OIT is Boring! First Two Months of Peanut Oral Immunotherapy

Guess what??? Oral Immunotherapy for my son’s life-threatening peanut allergy has been mostly . . . BORING!!! Hooray! Those who have been more closely connected to our journey can attest it hasn’t actually been completely boring – and I thank you all for your support through my little freak-outs – but overall, it really has been boring, and is becoming more so as we go. Since I’ve been bad about posting these last two months (in large part because the process has become so boring:), here’s a recap:

Early June – after one whole year of preparatory treatment with the amazing Dr. Inderpal Randhawa, C ingested peanut protein, on purpose, in hospital, for the very first time. Approximately 4-8mgs (roughly 1.5-3% of the protein in a single peanut). Approximate because he gagged up thefirst dose, woops. He had red itchy ears, and that was it. We were sent home at 2 mgs of peanut protein to be ingested each afternoon, with a 30 minute rest period before, and 60 minute rest period after.

OIT Rest Periods: It’s important to keep the body cool and the heart rate down when ingesting doses of your life-threatening allergen, because raised body temperature and heart rate can provoke a reaction, or make a reaction more severe. The Rest Period (of varying lengths, depending on the patient) is typical in OIT. It’s one of the trickier bits, as keeping a five year old boy calm for 90 minutes each day at approximately the same time isn’t always easy. But we’ve adjusted our schedules and lifestyle a bit to accommodate this. And now that we have a routine and a rhythm, the Rest Period is probably my favorite part. It’s become a quiet and peaceful part of the day (most of the time). Always a plus for any mommy. And yes, I have resorted to exorbitant amounts of screen time, but not as frequently as I’d expected. I’m incredibly lucky to have an extremely precocious little reader who discovered  Ron Roy’s A-Z Mysteries, Capital Mysteries, and Calendar Mysteries. He’s reading 1-2 of these a day, and often through his rest period. Quietly, by himself. You heard me. Quietly . . . by himself. How lucky am I?

Ok, so we were sent home on 2 mgs of peanut protein per day, and in the two months since starting, have gradually built up to 70 mgs per day. That’s from about a scant 1% of one peanut to 30 ish%. The amount is so tiny, that while we’re building up to an actual peanut, we’re “dosing” with pre-measured vials of watered down agave syrup in which the protein is suspended. Although the amount is small, C detests the taste of agave, so he gets one skittle before, one in the middle (we have to put a little water in the vial, shake, and drink remnants to be sure he’s getting ALL the peanut), and one right after. And on “updose” days (days when we jump to a higher amount of protein), he gets an extra three skittles.

Week 1: (2 mgs) was uneventful. One incident of red, itchy ears – like at the introduction appointment in hospital.

Week 2-6: This is the period when he had the most symptoms, as we were really ramping up. Early on, he had a minor, short-lived cold. But it seemed to irritate his system a bit. There was one dose where his temperature spiked and then came right back down. He had itchy ears, mild tummy aches, and some initial tongue pain with doses off and on for most of this period, a couple instances of drooling. I started feeding him right before and after doses to help with tummy aches a bit. But there were two reactions during this period that made my pulse quicken, and almost administer meds. One was on a day when he’d been out in the heat and sun for a long time in the morning, and he was already pretty wilted pre-dose. Fifteen minutes post dose, he looked at me with an uncharacteristic look of distress and told me he didn’t feel good. Except for the sun/heat in the a.m. everything else we did that day – rest period, food, water, dose amount – was exactly the same (really makes you see how the body handles it’s allergens differently, depending on so many other factors – and why setting the immune system up for success ahead of time is so crucial in minimizing reactions during treatment). After five days in a row with zero symptoms, something was different. And then he told me his throat hurt. I stopped what I was doing, had him strip down, put him in front of a fan, gave him ice water, and kept him talking and drinking to ensure nothing else was happening in there. He described his throat pain as “snapping” and “pulling”. I was one step away from meds, but his speech and swallowing remained fine. And the throat pain passed. As it did, the tummy ache came on worse than usual, and lasted about twenty minutes. After that, about 45 minutes post dose, he was fine. Back to normal. No meds. I emailed Dr. R, as I had done with many of his minor symptoms (during OIT, you check in with your doctor if things aren’t perfect or “normal” for you – they can adjust recommendations as you go), and he had us switch to cooking the dose into a single large pancake each day, and give it to him slowly over 30-45 minutes. We did this for one week, and then switched back to our “skittle” dosing. The first day back on straight peanut/agave, chased with skittles, was the second reaction that made me a little nervous. He came to me 10 minutes post dose and said he had a “hurt that starts at the top of my head and then goes down my body”. Hmm . . . we decided later he must have had an adrenaline rush . . . we think. After that, he a really bad tummy ache which he described as “blasting”. “Every minute it blasts, then it stops, then it does it again.” Huh, sounds like child labor . . . THEN he had a single hive on his lip. Duh duh duh. Aaaaaaaaah! And then drooling . . . oh boy. So I did the same thing I’d done before, kept him talking, and it did pass. No meds. I emailed Dr. R to ask if we should dose the same way the following day and he said yes, continue. And guess what? The next day, nothing happened. The day after that, nothing happened. And then the day after that, I was super nervous because he was tired, cranky, had been out in the sun swimming and exerting himself (of course we allowed 30 minutes rest post exertion), and he didn’t want to eat right before his dose so we had to do it on an empty-ish stomache. But nothing happened.

And then we went home, in a meandering fashion, because I was so tired and sleepy from being a worry wart (see pic). And because we found a pedal car on craigslist, and made a stop in Santa Monica to check it out and then buy it. And we wanted to drive up the coast, because it’s more pleasant. And then we were late to hip hop class. Which was kind of ok, because we were both tired and cranky (see pic). And then we went home and tried out the pedal car around the neighborhood, and then strong-armed both boys into going to bed, because everyone was tired and cranky (see pic). But everyone was also fine, and not reacting, and the next day we started at-home doses at the new higher level, and each week we’ve been updosing, and now he’s taking in 70 mgs every day. And nothing is happening. Well, almost nothing. Three tiny tummy aches, to which I said, “go to the bathroom”, and that solved it. One random hive. That’s it. Pretty much nothing. Pretty boring. And I have this strange, calm, quiet sense, that just might be the feeling of letting go of a little bit of anxiety. An anxiety that I’ve been wearing so constantly that it’s disappeared into normalcy. But now that it’s starting to evaporate, I sense it’s absence.

We’re not anywhere near done, though. We have weeks and months of dosing and updosing to get to our “graduation” challenge of 60 peanuts in one sitting. After that, we’ll still be dosing peanuts, but in larger quantities, and less frequently. Hopefully over time, dosing will be a monthly event. And there will be annual diagnostics to monitor what’s happening in his body. And he will still carry an Epi. And in a year or two, we will start this process all over again with his little brother (currently severely wheat and egg allergic, peanut and sesame questionable, so we’re avoiding). So real food “normalcy” for our family as a whole is still off in the distance. But we have the promise of it. And that promise has stripped away layers and layers of fear. And in about three weeks, C will be cleared to eat items which may be cross-contaminated with peanut, which means we will start doing some more really normal kid things with him. First up, doughnuts, and then ice cream. Next, maybe a birthday party where I don’t bring his own food. A sleepover sometime maybe? Trying a new restaurant? The school potluck? Oh the possibilities are endless . . . and in the meantime, we are just plain old . . . peacefully . . . bored.


OIT Mommy: An oral immunotherapy story; by Heidi and C

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