My son Tyler has always been independent and confident.
So much so that our family joked that we could put him on a plane by himself to China at the age of 4 and he would have managed just fine. So it was no surprise to us that he chose to go to college eight hours away where he didn’t know a soul. I wasn’t worried about him. I knew he would be fine, because he always has been.
This perspective changed when he had his second anaphylactic reaction at the age of 18.
Food Allergies Have Always Been A Part of Tyler’s Life
You see, food allergies have always been a part of his life. From birth, we struggled with finding the right formula for him to drink. We wound up having to buy predigested formulas from the pharmacy. Through allergy testing we learned that he was allergic to eggs and milk. Nuts weren’t even on our radar.
However, when he was 4, he had his first anaphylactic reaction. He was at daycare and they were building bird feeders when it happened. At the point in which they called me, Tyler had broken out in hives. By the time I made it there, his eyes were almost completely swollen shut. I rushed him to a local adult hospital and the physician in the ER suggested I find out what was in those bird feeders. I later learned that they were using peanut butter.
Tyler Was Also Allergic to Peanuts and Tree Nuts
We went back to his allergist at the time and did some more testing. He was allergic to peanuts and tree nuts, so we added them to the list of foods to avoid. We adapted to this new routine, and for the most part, he had a relatively “normal” childhood. We navigated all of the typical things that food allergy families face: school lunches, snacks, parties and restaurants.
Tyler wound up growing out of the egg allergy around age 5 or 6 and milk allergy by 12 or 13. As a teen, he began taking responsibility for his allergies and never had to use his epinephrine. He got comfortable managing everything himself and sailed through without having another allergic reaction in childhood.
Tyler Has an Anaphylactic Reaction at College
However, within the first couple of months of college, he had his second anaphylactic reaction. He was at someone’s house and accidentally ate something that had nuts in it. He immediately knew that something was wrong and told his friends he wasn’t feeling well. Long story short, his friends administered his epinephrine and called 911. I can’t express how thankful I am to them.
About a year later, he had a third anaphylactic reaction when he came in contact with nuts again. By this point, he had developed extreme anxiety around his food allergies. He was so afraid of having another one that he wouldn’t go anywhere. He would wipe down doorknobs and countertops. Eating at restaurants was out of the question. He stopped living his life and was no longer that confident, independent person.
For probably the first time in his life, I was worried about Tyler. I wondered how he was going eventually to work in an office? How was he going to live?
Researched Peanut Oral Immunotherapy
So I did some research and learned about peanut oral immunotherapy (OIT) happening at Cincinnati Children’s. OIT works similarly to allergy shots, where patients are given by mouth a progressive amount of the allergen until they build up a tolerance, or immunity, to it. I learned that by slowly introducing the food allergen, it may lower the risk of him having another life-threatening allergic reaction.
When I told Tyler about what I had learned, he was all in. He was so desperate to get back to normal life that he was willing to do anything. His new allergist, Dr. Assa’ad, had a long talk with him to make sure that he would be fully committed to the program.
You can read more about the peanut OIT protocol here. But essentially, after learning what his starting dose would be, he would need to eat a specified amount of peanuts every single day. And every couple of weeks, over a six-month period, he would go back to the clinic to have that amount carefully increased. Once he was desensitized, he would need to eat that maintenance dose of peanuts for the rest of his life. This would allow him to maintain immunity and thus, potentially avoid life-threatening allergic reactions.
Peanut OIT Offers Peace of Mind
We were totally on board and fully committed to the program. It offered exactly what we both needed: peace of mind. If he could feel confident that he wouldn’t have an allergic reaction, he could get back to living his life. And I would stop worrying that allergies had gotten in the way of his daily functioning.
So Tyler finished the protocol last fall. He now eats 8 peanuts every single day as his maintenance dose. He thinks of it as taking his “medicine” just like someone else needs to take a daily pill.
To get there, the allergy team determined his starting dose of 1/64 tsp of peanut flour. He ate that for two weeks straight. Then we went back in for a clinic visit, and they slightly increased the dose. We continued that incremental process for nearly six months. Following each dose, he would also need to be inactive for an hour or two. Any physical activity could increase blood flow and potentially cause the allergens to disperse throughout his body more quickly.
Peanut OIT Is Tedious, But Worth It
While the process was tedious, it was totally worth it. He is now “desensitized” to peanuts, and hasn’t had an allergic reaction since. Importantly, Tyler is back to his confident, independent self. He no longer wipes down doorknobs. He eats out at restaurants. And because he is desensitized, he can eat foods with “trace” peanuts. Naturally, the first thing he ate was a chocolate bar. I know the other nut allergy parents understand this one!
Most significantly, we have peace of mind. Tyler is no longer worried that he is going to have an anaphylactic reaction if he accidentally eats something with nuts. And I have peace of mind that he’s going to function again. I’d say he’s done that and then some. In fact, he’s planning on doing an internship out West this summer, where he will know no one. It’s exactly what I pictured he’d be doing, since the time he was 4 years old.
Editor’s Note, May 2021: Tyler’s mom Courtney recently shared with us that Tyler has continued to do well since she first shared his peanut allergy story with us. Tyler graduated college in 2019 and is now working and living in Southern California. He continues to eat his daily maintenance dose of peanuts and hasn’t had any reactions since finishing OIT therapy. Courtney says, “The OIT truly was life changing for him!”