My son experienced a life-threatening anaphylactic reaction and was diagnosed with a peanut allergy at age 2. You can read more about that story here. Since that day, I’ve carried two EpiPens, Benadryl and an unshakable sense of anxiety about my son coming into contact with a deadly substance. His allergy to peanuts has shaped the way I parent. It has impacted the way he experiences the world. The allergy also has limited the opportunities that we consider safe for him. There are parties and events that we skip simply because we can’t guarantee that the food will be safe. I’ve endured more than a few eye rolls at the ice cream shop when we ask for a scoop of chocolate from an unopened container with newly washed scoops. Sending him to school has been an act of faith and trust.
Pediatricians and experts in the allergy field recommend strict avoidance of the known allergen. Allergy Action Plans are written, signed and distributed to everyone with whom the child may have contact. The first multi-word phrases my son learned were “I can’t have nuts” and “I have a peanut allergy”. We coached him to ask about peanuts every single time he accepted food from someone, even from someone he knew well. This has been a nerve-racking existence that is often overwhelming for him and for us. Sleep-away summer camp seemed impossible. Traveling abroad where he doesn’t speak the language seemed totally out of the question. Can you imagine the likelihood of peanut cross-contamination in Thailand? Probably a terrifying 100%.
There has to be a better way
Through searching and serendipity, I stumbled across a treatment for food allergies called Oral Immunotherapy, or OIT for short. OIT is very similar to allergy shots in that very small amounts of the allergen are introduced in a very controlled and methodical way. All we had to do was find a Board Certified Allergist, willing to provide OIT. Unfortunately, this proved to be a challenge. OIT doctors are rare and the demand far outpaces the number of doctors available. After more searching and a substantial time on the wait list, we drove the 2.5 hours to West Hartford, CT for the initial desensitization visit.
The initial appointment
I cannot begin to describe the way it messes with your mind to encourage your child to intentionally ingest the very thing we’ve worked so hard to avoid. Every cell in my body was screaming “You have a peanut allergy! Don’t eat that! It has peanut in it!” but I knew we were in good, capable hands. His medical team has successfully treated over 1,000 patients. I knew I had to appear confident and brave, but I wasn’t fooling anyone. We were both petrified.
He took his first dose of peanut protein mixed with chocolate pudding (preceded and followed by a LOT of carbs). That first dose was so tiny, we could hardly see it. It was exactly .0051% of 1 peanut. Then we watched and waited for any sign of reaction. When there was none, we doubled the dose three more times. When he did react, it wasn’t anaphylactic thankfully. He sneezed a few times, had a red nose and watery eyes. Within five seconds of that first sneeze, the medical team was in the room to observe and intervene if needed. It wasn’t needed, but we decided not increase the dose any further. We left that day with a plan to return the next day to dose at that same level, which was .041% of 1 peanut.
Following the protocol at home
After that second appointment, they sent us home with 14 individually packaged doses of peanut protein to be eaten every day for the next two weeks. The protocol for his daily dose is to load up on starchy carbs, eats the dose of peanut mixed with yogurt, applesauce or pudding and load up on carbs again. The hardest part of the protocol is the mandatory period of rest after each dose. Because food is metabolized faster when you have a faster heart rate, it’s vital to be still and calm for at least 2 hours. Finding two unscheduled hours in a busy day is challenging. Keeping a seven-year old boy still and calm for 2 hours has felt nearly impossible at times.
Every other week, we drive the 5+ hours round trip to Connecticut to increase his dose in the office where they can monitor for a reaction. This has meant a lot of missed days of school, a lot of miles on the car, and a lot of podcasts (hence, my posts on family podcasts found here and here). We are on the slow track–at times we go three weeks between appointments instead of two. We’ve increased the dose by less than what the protocol calls for based on how he’s feeling and any slight reactions he has experienced. It looks like we’ll be making the trips to CT well into the fall and winter, which is more than a year of treatment in total.
Hope for his future
There are several benchmark goals in OIT: cross-contamination proof, bite-proof, full desensitization, and passing a food challenge. At this point, he is up to 38% of one peanut. Daily dosing will likely continue through his entire life, though we can choose when to stop increasing the dose. Eventually he’ll be able to eat an actual peanut (or peanut M&M) as his dose. Researchers are currently studying how long desensitization remains effective if the allergen isn’t ingested regularly.
For now, we are not even close to the first benchmark and that is okay with us. Every day that my son eats his dose and does not react we celebrate that achievement. We are in no rush to get through the protocol. He is more desensitized today than he was when he started. Slow and steady will win this race and it will be well worth it when he no longer has to ask “does this have peanuts in it?”