OIT – The Nearest Future

OIT: Milk Graduation!

We’ve had an exciting weekend–last Thursday E graduated from milk OIT which means he can now freely eat dairy! At graduation E drank 300 ml of whole milk (with strawberry syrup in it, natch) with no problem. It’s truly amazing and our whole family feels so grateful.

We love Dr. Olsen. He always takes time to talk with E about whatever he wants to discuss which is usually computer games ;) — We love Dr. Olsen. He always takes time to talk with E about whatever he wants to discuss which is usually computer games 😉

After our appointment we went straight to dinner at The Pie. They make great pizza and before it was the only pizza place we could go as a family because they would put Daiya non-dairy cheese on a pizza for E.

But on Thursday, E had his first piece of real pizza with cow cheese and cheese sticks AND an ice cream sundae for dessert 🙂

And he was fine! Watching him eat all that dairy was AMAZING, almost like I was watching a magic trick and having trouble believing my eyes.

First bite of real ice cream and whipped cream! Mimi was almost as excited as E was.

We’ve been going a little crazy since Thursday crossing off things off of E’s dairy wishlist. He went to Taco Bell for the first time, got the free soft-serve ice cream at Dickies (which both kids have been talking about for months), ate buttered popcorn at the movies, and ate enchiladas with real cheese.

First visit to Taco Bell! He loved the nacho cheese.

Free-not-very-good soft serve never tasted so good! — Free-average-tasting soft serve never tasted so good!

It’s such a trip to see him eat things with dairy. I keep taking pictures.

E’s still allergic to eggs, peanuts, nuts and shrimp but at graduation we got some good news which which I’ll fill you in on later.

If you are interested in Oral Immunotherapy for food allergies I recommend our doctor, Rocky Mountain Allergy Asthma and Immunology without reservation. And this Facebook group, OIT 101, was helpful in answering a lot of my questions. If you have questions about our personal experience I’d love to hear from you in the comments or in email.

Also, let me know if you have any dairy suggestions of things for him to try! I’m going grocery shopping today and am getting real cream cheese for bagels, Kraft Macaroni and Cheese, Cozy Shack pudding, and whatever else dairy catches my eye. I’m giving us a week to go a little nuts and then we’re going to find our new (creamy, dairy-licous) normal.

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OIT Update: Stomach Trouble

E’s oral immunotherapy (OIT) for milk is going well but we’ve had a few bumps. The week after the change to daylight savings E complained about a stomach ache after dosing in the morning. I texted the on-call Dr. and he said to give him some prescription Zantac which seemed to resolve things.

His stomach hurt 2 or 3 more mornings that week. Once his stomach was still churning when our carpool came by to take him to school so I sent them on and kept E home for another hour to see if it resolved. It did so I took him to school, but I admit I was a little nervous until I picked him up and could keep an eye on him myself.

One other day he said his stomach hurt but begged not to take the Zantac because it tasted so bad. He said he’d throw up if I made him take it and yep, he threw up almost making it all the way to the trash can.

The odd thing was that he didn’t have any stomach issues when he dosed in the evening. Our doctor said that eating too soon after waking up may be making E nauseated and suggested waking E up earlier before feeding him breakfast.

It was already hard to get E out of bed at 6:15 so the idea of waking him up even earlier was daunting. But I told him that if he gets out of bed quickly he can play computer games for 15 minutes while I make his breakfast. It has worked! Since he started getting up earlier before eating breakfast his stomach hasn’t bothered him. Hooray for the healing power of computer games 😉

So we are still chugging along. Right now E’s at 8mL (a little over 1 1/2 teaspoons) of whole milk twice a day. If other issues come up it may affect things but right now we’re on track for E to graduate from milk OIT in July.

Food Allergies and OIT

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 🙂