Sunday, November 20, 2022

Oral Immunotherapy

We have been spending a lot of time at the allergist over the past few months in our first experience with Oral Immunotherapy (OIT). OIT is introducing a small dose of a food allergen, then slowly increasing it over time to hopefully desensitize the immune system. It’s not a “cure”; it doesn’t work for everybody; and those it does work for, they still can't go to town on a jar of peanut butter. BUT it can reduce the risk of anaphylaxis which is great.

Peanut OIT is the main one I have heard of. Every time I tell someone my kid has food allergies, inevitably, I get this response: “Oh! My friend’s kid had a peanut allergy when he was a baby! But they did this thing at the doctor’s office and now he can eat Resees!” Sounds like a miracle to me. Because of these stories, every time I went to the allergist I would ask, “So, that thing where they introduce a little bit of peanut dust…. When can we start that?” And my allergist would always say when she’s four.

Then in January, there was this new study that found the EARLIER you start OIT the BETTER OUTCOMES. How early? Ages 1-3. I pestered our allergist again- but her answer remained the same. The FDA has only approved the peanut powder in ages 4 and above. But apparently my constant questions about when we could start peanut OIT did accomplish something because we convinced her to start us on baked milk OIT. This has involved baking muffins with real dairy milk and giving her small doses (starting with 1/64 of a muffin) for two weeks and then doubling it.

Every time we double it, though, we have to go into the see allergist. And we have to stay for a few hours to see her reaction. Which means we have spent a lot of time at the allergist. And a lot of time baking and cutting up muffins. How do you cut up a muffin into 64 equal pieces? Very carefully. Then because 2 weeks of 1/64 of a muffin is only ¼ of a muffin, we cut up the next size and the next size and the next size… and froze them in separate plastic bags. Now we are up to ¼ of a muffin and we only have: ½, ¾, and 1 whole muffin left! Just 3 more visits!

48 frozen plain muffin quarters. Look how big they are! It's a recognizable fraction! C'mon baby girl, you're so close to a full muffin. We can do this!
 
Some rules about OIT that I didn’t realize before we embarked on this journey:

  • They have to be completely well when you give them the allergen. Not just when you double it, but EVERY DAY when she get's her muffin crumb, she has to have zero sickness. And if she is a little sick (it's cold and flu season now, she's in daycare, she's always sick), we have to wait to start giving it to her again until she's well. So instead of taking 16 weeks, this may take our entire lives.
  • Hot baths and physical activity can increase their risk of reaction so we have to keep her calm after she has her muffin. Super easy to explain to a two year old.
  • Turns out plain muffins are boring to eat and now that she’s eating a sizable muffin chunk, it’s taking some convincing for her to eat it. We can’t add blueberries or chocolate chips to the muffins because that would throw off how big they are/how much baked milk is in each one. So I’ve had to make a chocolate ganache (dairy free, clearly) dipping sauce every day for dinner. This has been hard for a muffin, but it's a muffin and she likes muffins. I can imagine it's going to be a bigger issue if we do it with other foods.

I think the plan is for us to do this with baked egg muffins and maybe garlic powder and then when she is 4 peanut powder?  We are definitely going to get to know our allergist well. That’s potentially 8 visits x 4 food and hours and hours and days and days spent watching Daniel Tiger on their little computer screen. But if she can eat milk and egg and garlic and small amounts of peanut and not need epinephrine? That’ll be totally worth it.

1 comment:

  1. So good to learn about this intricate, lengthy, and HOPEFUL process.

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