Eli was diagnosed with life threatening food allergies when he was one year old. It is a long story that I can someday tell, but in short, we learned he is allergic to milk, eggs, cashews, and pistachios. They are all anaphylactic allergies for which he carries epi-pens. I find it necessary to stop here and do some educating about the difference between a food allergy and a food intolerance. In our society, the terms are used interchangeably, but they couldn’t be more different. In the simplest terms, if a person does not carry epi-pens, they either don’t take their food allergies seriously or they don’t actually have food allergies, instead they have intolerances, and those are two very different things. The distinction is important. Treating them the same at worst puts food allergic people’s lives at risk, and at best leaves them open to judgment and ridicule.
The definition of each is fairly simple, an intolerance is the gut’s inability to process something in a food you eat. For example, people who are lactose intolerant lack an enzyme that helps their gut break down lactase, which is a sugar in milk. People with intolerances generally avoid their trigger foods and while their reactions are uncomfortable, they are not life threatening. People with intolerances are generally able to handle cross contact, or even to eat a certain amount of their trigger foods before they get uncomfortable. They do not need epi-pens. A food allergy is the body’s immune system responding to a protein (or proteins) in food. Even miniscule amounts can cause a reaction, including through cross contact. Every reaction has the potential to be life threatening. Allergenic foods must be strictly avoided, there is no amount of the food or cross contact that is okay. People with food allergies must carry two epi-pens with them at all times. For us, this very small lack of knowledge causes some of the most difficult situations Eli and our family have encountered (and some of the most hurtful judgement from others too).
Many young children who are diagnosed with food allergies will eventually outgrow them. For this reason, we haven’t pursued any type of treatment so far (although the options are dismal). I think, each year, we just hoped he would outgrow them. As he got older, we hoped he would outgrow just one (milk?!). As the years passed, his allergist told us that he is past the age when kids would typically outgrow his food allergies. We began to grapple with what it might mean for him to spend the rest of his life allergic to not just one, but four different foods.
I will someday write about the positive lessons and the blessings of food allergies, but let me be clear, food allergies are not a good thing. It is not easy. Even though food allergies are covered by the Americans with Disabilities Act, there are countless situations where he is in danger, including those where he has legal standing for accommodations. Stop for a minute and consider how many food related events happen at school or church or within a family. How often milk is spilled in the school cafeteria, how closely we as Americans hold our food related traditions. How people, for reasons I do not understand, refuse to give up eating tree nuts on planes (who are these people who are so obsessed with nuts that they can’t eat them for a few hours?!). How food is a connection point for people and how, when you have life threatening food allergies, it leaves you out. Again, I am excited to share with you about our friends who willingly stepped into making safe places for him, about his school Faith Bible, who keeps him safe and his classmates who protect him. It is a beautiful part of this story, but for now, I want to emphasize that Eli’s life is often in danger. The poison that could send him to the hospital is all around him every day. That there is unseen heartache for people like Eli and families like mine. We have skipped school events, church potlucks, and birthday parties. I taught my toddler how to use his epi-pen. He knew the symptoms of a life threatening allergic reaction before he could read. I attended his lunch time every day of his kindergarten year, and a kid still bullied him with cheese. There are secret moments at home where he has cried because he felt unsafe or left out. He has bravely asked his allergist if he will ever outgrow his allergies (a heartbreaking moment). I have had to tell my child how severe his reaction could really be, what the worst case scenario is (how many of us have told our child that their life is at risk and truly meant it?). When you learn about all we will do with this program and all of the money and time we will spend, I hope you will remember this paragraph. I hope I will too.
In January of last year, I was listening to a year end wrap up podcast and people were sharing brave things they did in the previous year. One guest mentioned how proud they were that they had flown back and forth for years with their food allergic child and now that child was in remission. I initially didn’t think much of it, based on the above stated misconceptions about food allergies and intolerances, but I couldn’t stop thinking about it. I found the show notes for the podcast and clicked the link. My husband and I poured over the website, looked up reviews, and did our due diligence. We couldn’t believe that there was someone out there doing this kind of work and that there were kids walking around in the world who used to be like Eli and now ate freely. We contacted the Food Allergy Institute and scheduled his first appointment.
I will get into more details in future posts, but here is the rundown. He will be in this treatment program for at least 3 ½ years. It involves a scale of foods with biosimilar proteins to his allergenic foods, and works its way up to him actually eating his foods. We travel to Long Beach, California every 2-3 months for treatment, where we receive pages and pages of notes. There is testing, medicine, measuring, timing, and of course both hope and fear tangled up together. The end result for patients in this program is what they call “food freedom”, basically, that he will get to eat like the rest of us. In medical terms, he will be in remission.
I’ve been asked if 3 ½ years feels like a long time to wait. And in some ways, yes, it does. We are so eager for him to feel safe and included in the world. To introduce him to our favorite restaurants. To be able to travel without bringing all of our food with us, to send him to college without fear of an allergic reaction. For him to just eat what everyone else is eating at school parties, birthdays, and more. In other ways though? It just feels like a miracle. What is 3 years or 4 or 5, when it could have been the rest of his life? I had already started looking into how food allergic students go to college, thinking about how we will talk about food allergies and dating. A future without those worries? It is worth waiting and working for. It is a miracle.