Out of Our Comfort Zone

I completely understand why some people are intimidated by OIT. It can be overwhelming for me. Just the thought of giving my kid “poison” every morning is a lot to process. I have to take one day at a time because my brain can’t handle more than that. While Oral Immunotherapy has promising and proven results, it is restrictive, and to be completely honest, stressful. When we agreed to participate in the program, I had no idea how much it would impact our lives. It has definitely been an adjustment for us. Of course food allergies alone are restrictive, but we have been doing it for 12 years, so we’ve had a lot of practice. This program is a whole new ball game, and one that is constantly pushing us out of our comfort zone.

I knew we would have to dose our son with his allergens everyday during the program and hoped that by the end, he would not have to worry about what he ate anymore. It seemed like this was the golden road to less stress and anxiety! According to what I have read from other people, this has been life changing for those who have completed the program. I have to constantly remember that in the end, it will be less stressful eventually! It may not be a golden stress-free road on the way to our end goal, but I am hoping that this long, steep and obstacle-ridden road is going to end at a pot of gold.

Our OIT Restrictions

The restrictions we have are as follows:

• Must carry all prescribed medication at all times.
• Refrain from any activity that would elevate body temperature or heart rate 30 minutes prior to or 2 hours after a dose of allergen.
• Must have a good breakfast and a full stomach before dosing.
• Must finish eating between 15 minutes and an hour before dosing.
• Doses must be supervised by an adult.
• Must be supervised by an adult for 1 hour after dosing.
• Doses must be taken within 22-26 hours of the last dose.
• Our milk and egg doses must be refrigerated and may not be left out for more than 30 minutes.
• Doses must be thrown out after 7 days

At first glance, this doesn’t look so bad. It all seemed reasonable to us when we signed the papers agreeing that we would comply with the program rules. When we got home and really started thinking through how this was going to work, it got a little more complicated.

Riley’s school has to be at the school at 7:30am. He has to be supervised for an hour after dosing, which put our dose at 6:30am, which meant he has to be done eating by 6:15am at the latest, which meant he would need to get up at 5:45am and eat right away. Whoa. That is early. Especially for a kid who has already been struggling to get up in the morning.

The doctor suggested we try arranging for my husband to stay at the school with Riley during the time he was supposed to be supervised, so he wouldn’t have to get up so early. The plan was for my husband to school to buy an extra half hour of sleep for our son, so he doesn’t have to get up before 6am. Riley HATED the idea of having a parent come to school with him, but we finally compromised and my husband sits in a different room across the hall ready to help with medication if the teacher notices Riley having any reaction.

Weekends

But we get to sleep in on the weekends, right? Thankfully, we do get a break on Saturdays! He has a two hour window between doses, so he can’t sleep in however long he wants. BUT we are lucky because we up-dose on Fridays at the doctor’s office around 8:00am, which means he has until about 10am to take his dose on Saturdays. He has be be up and eating by 9:15am, but that is a lot better than 5:45-6am. Sundays we go to church at 9am, so he has to be up by 7am to give him time to eat, dose, and have an hour of supervision before we go.

I am still trying to convince my son that sleeping in on the weekends is awesome. He isn’t thrilled that Sunday “sleeping in” is only until 7am, which is understandable. His body is getting used to waking up early and he can’t sleep in very long anyway, so it is getting easier. It has taken months to get there, but at least it is easier.

Traveling, Overnighters, and Vacations

It seemed like we had a pretty good hold of the schedule for school, but within the first month, his youth group scheduled a camp out and I about fell apart.

Traveling is tricky. The dose has to be refrigerated. It has to be taken within a very specific time range and there can’t be any physical activity 2 hours afterward. One of us has to be there to supervise our son for an hour, AND on top of that, we were advised not to be more than 10 minutes from a hospital. Camping is a logistic nightmare. I’m still trying to figure that out.

How about vacations? We did one trip so far 4 hours from our home for a soccer tournament. We rented a condo with a kitchen and brought our doses in a plug in cooler to keep the doses until we go to the refrigerator. It wasn’t too bad. It gave me hope that we would figure out ways to make this work for the future.

We have another bigger trip planned that we scheduled long before we knew we would be doing OIT. We have been working with the doctor to accommodate our plans. It has taken A LOT of forethought and planning, but I’m thinking once we’ve done it a few times, it will be second nature.

Hopeful for the Future

Sometimes I find myself thinking, “It’s okay, when OIT is over, it will be easier.” but I am also realizing that this is possibly a new way of life. When we are done, Riley will still be on maintenance, which means he will still have to dose every morning potentially for the rest of his life. While some of the restrictions will get easier, a lot of them will be the same. I do think it will be easier because we will get used to it and accept our new limitations. It seems like we will be trading food limitations and anxiety in social settings for sleep, scheduling and travel limitations. I am eager to talk to more individuals who have completed the program. I am still looking for comfort knowing this whole process will leave us feeling less restricted than we did in the past. For now, I hold onto the fact that I know this will protect him and keep him safe, and it is completely worth it even just for that alone.