I was hoping to get this post out sooner, but this year has been crazy busy and has flown by! I wanted to share our experiences with peanut oral immunotherapy in hopes it helps someone else. Before starting this journey, I read everything I could and a lot of what I read helped to guide our decision.
Please note, I am not a medical professional, just a mom. Everything below is just our experiences and this process should only take place after consulting with a qualified allergist and under her supervision.
My seven year old son has a peanut allergy diagnosed at 18 months by an allergist (scratch test). He had his first reaction around 16 months after eating peanut butter. Over the course of the next 6 years, scratch tests and a blood test showed he was unlikely to outgrow his allergy. Strict avoidance gets difficult as my son gets older. Birthday parties, weddings, potlucks, school parties, and school lunches become places were he could have an exposure and subsequent reaction. He carries an epi-pen and benadryl at all times. We use a runner's belt for this purpose (designed for a phone).
Our doctor reviewed my son's medical record including previous scratch tests, blood work - IGE levels and component test, and performed a scratch test in the office. She asked us questions about seasonal allergies, other food allergies, and explained the process. She gave us plenty of opportunities to ask questions.
The most common side effects of OIT are itching around the mouth and stomach ache. There is a chance of more serious side effects.
If our son were to become ill, especially if he has a fever, we'd need to call the allergist to ask about how to proceed. Illness can affect his body's ability to metabolize the peanut.
Our goal at the end of 1 year (twice monthly visits) will be that our son should be able to consume 1-2 peanuts without going into anaphylaxis or having an adverse reaction. He will still have a peanut allergy and he will still need to carry his epi-pen and benadryl. (Since he turned 6, we've switched to the dissolvable pill form of benadryl, which is smaller and doesn't spill.)
Why we wanted to do OIT:
1. We won't have to worry about cross-contamination in restaurants. He will be able to eat at bakeries and ice cream stores.
2. He will be safer at school. His school is NOT nut free and there is peanut in the classroom daily. Keyboard, books, and toys may all be contaminated with peanut.
3. Travel will be easier. We won't have to stress about nuts on airplanes or peanut in hotel rooms, on amusement park rides.
4. When he goes out with his friends, he can relax and have fun without worry in movie theatres, at diners, at the school cafeteria, in college.
HOW MUCH OIT COSTS
Every insurance plan is different, so I can't tell you what it will cost out of pocket.
We received a paper from the doctor with the charge codes they use to bill insurance. We called our insurance to confirm what this process would cost.
We spoke to my son's school about this process and needed to work out with them how he'd make up work he'd miss when going to these appointments. We'd be "up dosing" in the doctor's office Thursday afternoons, which means he'd miss half a day of school every other week.
FIRST DAY OF PEANUT
We were at the office for 5 hours. The doctor took our son's height, weight and vitals, and had him perform a breathing test (when the patient blows into a tube as hard as he can).
We brought lots of carbs with us. After eating, the doctor dosed our son with 0.1mg of peanut (looked like 3-5 grains of salt in a cup) along with water and more food. He was monitored for an hour, then given 0.2mg of peanut protein following the same food, water and rest procedures. Then an hour later, he was given 0.4mg of peanut.
The day after the 5 hour appointment, we returned to the office.
Our son was again dosed with 0.4mg and monitored. We left with enough doses (one per day and an extra in case we spilled) to last until our next appointment, in about 2 weeks (this would be the same process every two weeks after that - leaving the office with the new daily doses, enough to last until the next appointment).
The doses cost $2.50 per dose and are not covered by insurance. The doses are the same as given in the doctor's office. We do not increase the dose at home. "Up dosing" only occurs in the doctor's office where the patient is monitored.
THE NEXT 10 MONTHS
Every day, after school, we give our son his peanut dose.
1. He takes his probiotic when he arrives home. (we've tried the various flavors of Nature's Way and my son says they all taste the same)
2. Give our son carbs, like a muffin, bread, cookie, whatever he wants.
3. Mix the peanut dose with 1/4tsp of water. Stir to dissolve.
4. Drop 1TBSP of applesauce (or pudding or yogurt) into the cup. Stir to mix well.
5. Give the mixture containing peanut to our son.
6. Drink water to make sure none sticks in his mouth.
7. Eat again.
8. Rest for 2 hours. This means homework, movie, video games, reading, etc. No exercise or hot showers (no increase in core body temperature).
9. Record information on log provided by the doctor.
Every two weeks, we go to the doctor's office to increase the dose (up dose).
We expected the process to take at least 1 year. At 10 months, he is eating 4 peanuts (or 5 peanut M&M's daily). He's not had any adverse reactions. He's not had any stomach aches.
COMMUNICATION WITH THE SCHOOL
This is the letter we sent to his school which updates them to his progress.
To Whom It May Concern:
[STUDENT NAME] has completed an initial course of peanut oral immunotherapy. While [NAME] is still allergic to peanuts and will carry his auvi-q/epi-pen, the following changes may be made to his 504 educational plan or equivalent:
- peanut butter
- candy containing peanut – like peanut M&Ms, Reece’s Cups, Snickers bars
- anything [NAME] feels “weird” about eating
- bakery foods that do NOT contain peanut such as Dunkin donuts / munchkins
- grocery store bakery foods that do NOT contain peanut or peanut butter
- foods that list “May Contain Peanut” are okay
- foods that are “Made in a facility with peanut” are okay
- foods that are “Processed on shared lines with peanut” are okay
- buffet foods / catered foods that do not contain peanut (but may have had minor cross-contamination) are okay
[NAME] should still ask an adult about foods that are handed out during classroom parties, birthday parties, super kid parties, classroom treats, or similar.
Any allergic reaction should be treated as described in his FARE Food Allergy and Anaphylaxis Emergency Care Plan on file with the school nurse.
PROS OF OIT
This could be a massive list.
Holidays parties were much less stressful. After completing this round of OIT, the number of times he couldn't have something were slim. Before, we had to pack a lunch for him everywhere we went since we could never be sure what was safe. Now, it's usually pretty clear if something has peanut butter or peanuts. Previously, so many foods were off limits because every ingredient couldn't be checked and it wasn't worth the risk.
Now, we've eaten bakery foods. We've eaten at dunkin donuts.
My son is no longer excluded from classroom birthday parties (his school does not have a policy about safe food and allows students to bring whatever they want to celebrate their birthdays...and yeah, I have a HUGE chip on my shoulder about this and about parents bringing peanut into the classroom because it could've killed my child and they knew it and did it anyway...)
My stress level is lower. I don't worry about accidental exposure.
CONS OF OIT
We had to follow the protocol every day. This sometimes took scheduling, planning ahead, and forgoing plans to make sure that OIT was not interrupted. My son wanted to go outside and play with his neighborhood friends, but couldn't while "on dosing" (the two hour window after dosing).
My son will also be on maintenance - 4 peanuts and a probiotic - for the foreseeable future.
OIT is not a "cure" for a peanut allergy. He still has a peanut allergy.
At any point, my son can return to OIT and continue up-dosing. There's a concept of free eating, which means raising the level of peanut tolerance to the point that anything could be eaten. This requires dosing up to 20 peanuts, a food challenge and a daily maintenance dose of 8 peanuts. I don't know if we'll take this path, or if more options will open up with the peanut "patch" or AIMMUNE, but I believe a true cure is coming.
But until then, the world is a safer, happier, more inclusive place for my son.
If you have any questions, feel free to post below. Allergy parents always stick together.