We found out about E’s food allergies when he was 9 months old. We were going out to dinner with N’s grandpa and while I had only breastfed him up until then I brought along a bottle of formula to give E at the restaurant. Within seconds of drinking it he threw up and started breaking out in hives. He ended up hospitalized for the night.
Skin and blood tests later confirmed allergies for milk, egg, peanuts, tree nuts, and shrimp. Since then we have strictly avoided all his allergens.
All of our family meals exclude those ingredients or are compartmentalized so E can have a safe option. (e.g. when I make enchiladas I make two pans and put dairy-free cheese on one for him.) It’s been an adjustment but very manageable. Dealing with the outside world is harder.
When E goes to a birthday party I go along too and bring his own food and an egg-free, dairy-cupcake cupcake and his epipen. When we fly, we board early and I carefully wipe down his seat and tray table. (Last time I found a few almonds under his chair, yay :-/) Going to a new restaurant causes anxiety and requires looking up their allergen info beforehand or calling to talk to the chef. Traveling out of town takes a lot of planning.
At school he eats lunch separately from his friends at a food allergy table with just one other kid. He has a bag of safe treats in his classroom to substitute for when kids bring in things he’s allergic to (which happens a lot) but it bums him out to feel excluded. So for every school party I volunteer to bring the snack so I can make sure it’s safe for everyone and to keep an eye out for him. Yada, yada, yada…all of this is routine by now but it wears on E and our whole family.
But this last December E started oral immunotherapy (OIT) which is a treatment where you ingest a small dose of your allergen every day, gradually increasing the amount until you can eat it freely. There was an article in the Wall Street Journal about it recently.
I first heard about OIT when a little girl in E’s class last year started treatment for milk. I followed her progress via a Facebook group her mom set up and was amazed when she was eating ice cream and other dairy by the end of the year. Since then another little boy in their class finished it for his peanut allergy and another friend of our started for milk. So we made an appointment with Dr. Jones and I joined a few OIT Facebook groups to learn more.
We became convinced that this was the best chance E had of living a more normal life without the anxiety and exclusion that comes from food allergies. For the first time since we were told it was unlikely E would outgrow his food allergies I felt hopeful.
We were on the waiting list for about 8 months but since we started in December it has been going really well. E started on a diluted milk solution but he is now dosing with whole milk (!) We dose twice a day. E is supposed to eat at least 15 minutes before a dose and keep his heart rate down for 2 hours after to minimize chances of a reaction. During the school week he needs to be up with breakfast in his stomach by 6:30am so I can monitor him for a hour before he leaves for school, and also so it will be more than 2 hours until morning recess so he can run around.
E hasn’t had any side effects, like an upset stomach, that sometimes occur. If things go according to schedule he’ll graduate from milk OIT in about 3 months. Hope is a wonderful and welcome thing!
I could go on and on about OIT (as you can tell) but for today I’ll stop here. If you’re interested in learning more, this Facebook group was helpful to me. They aren’t unbiased and are definitely pro-OIT but they’ve collected a lot of info and research in a pinned post that I found helpful.
And feel free to ask me any questions 🙂
5 thoughts on “Food Allergies and OIT”
This is so awesome! You are seriously one of my Mommy Hero’s. I can’t imagine the stress and patience that allergies have brought through the years. But I’ve kept all your stories logged away in my mind should I ever experience anything similar with my children.
Please give us updated on the OIT. I’m very eager to hear follow-up details. Are you planning on starting another round for another allergen once the current milk one is done?
Celeste, you are so kind! I will definitely post updates as we progress with OIT. We go to the dr’s office every week to updose to the next amount of milk and so far things have been pretty uneventful which I’m happy about 🙂
When E graduates from milk we’re going to have his bloodwork done again to check on his other allergies. So far some of his tree nut numbers have been low enough that the allergist is talking about doing some in-office food challenges to see if he can safely eat some nuts and we wouldn’t have to do OIT for them. But yes, we’re planning on doing OIT for all of his allergens. It may take us a couple of years (each round is 6-8 months) but it will be worth it for him not to have this anxiety in our lives.
And by the way, E asked me to buy him a knitting loom! He wants to give it a try. We got him a little loom (which I need to figure out before I can teach him, haha) and some yarn. Mimi has asked him to make her a scarf 🙂
Love it! If he does make a scarf please post it 🙂
I am so glad this is going well!! Hooray for hope!