This is a guest post contributed by my friend Paige Viani. Paige has shared so much about her son Nico’s severe allergies, and has given me insight into what allergy moms go through on a daily basis. It was Paige who inspired me to become a “Teal Pumpkin” house on Halloween, and I try my best to be empathetic and cautious with children who I know to suffer from allergies. I can’t imagine what it would feel like to be in her shoes, knowing that the most commonly encountered foods could seriously harm- or even kill her child. I’m grateful to her for being so open here in hopes of educating others about allergies and demystifying what it’s like to be an allergy mom, as well as sharing ways you can help make the world a little less scary for allergy families.
I see you. I see you sigh when the sign on the door says no nuts. I see you roll your eyes as the flight attendant announces an allergy and asks you to kindly refrain from eating your snack until you arrive at your destination. I see you talking to the teacher about your picky eater only liking a certain food, and being upset that your child cannot have what they like. I see you, and I am not mad. In fact, I used to be you. That was before I got a crash course in food allergies.
My son Nico is three. He is a sensitive, funny, sweet, moody, and unbelievably handsome “normal” little boy. If you were to see him at the park, you would see him fumble up the ladder, asking me for help, trying to keep up with his big sister. What you would not see is how difficult it is to keep this completely “normal” little boy breathing. Because each time we leave the house with this sweet boy, we are playing Russian roulette with his life. Sounds dramatic, right?
My boy came into this world just 13 ½ months after his big sister, and was your typical, floppy, easy going newborn. He seemed to demand being held a little more than his sister did, but he was about 4 weeks early, so we did not think anything of it. Then, at around 2 weeks, he stopped sleeping and started screaming. His skin was rough, red, and swollen. He had a lot of trouble going to the bathroom. His eyes were always puffy. He arched and screamed in pain all hours of the day, as he rubbed his itchy head back and forth on any surface it met. Something was not “normal.”
I was lost. I was not prepared for this child in any way, and now something was clearly wrong. I was incredibly lucky to have a lot of pre and postnatal support, from my midwife who made house visits, my doula who texted and chatted with me constantly, and a local IBCLC who I call the “boob master”. It was suggested that maybe my son had a dairy and soy intolerance. These women all suggested I give those things up, and give it a couple of weeks to see if it provided my son with any relief. And it did… a little bit.
Over the next few months, we had more reactions, and gave up even more foods. By 4 months, I had given up all dairy, gluten, soy, egg, and tuna. Then, at around 10 months, we found out that he was allergic to nuts. He took one sip of his sister’s water cup, and immediately had swollen eyes, a face full of hives, and an awful cough. I could not figure out what caused the reaction… we eventually realized my daughter had had almond milk with breakfast, and was drinking water from her cup at that time. His next reaction to nuts was from me using almond flour to make French macarons, in a completely different room. This was an airborne reaction. He did not touch it, he did not eat it, he was simply in the same building. My son was not even a year old, and he was allergic to dairy, gluten, soy, egg, coconut, peanut, tree nut, chick pea, flaxseed, and tuna. So… ALL FOOD.
The next few months were filled with more testing and doctors, and purging our home of all nut products, since this was his only known airborne allergen. Educating ourselves on how we can best keep Nico safe, learning how to carry and use epi-pens, etc. This was not a minor change; this diagnosis took grip of nearly every aspect of our lives. At home, we were safe, but to leave the house… that meant I had to rely on other people’s compassion and understanding; something I think most people would agree there is not enough of in the world today.
By 18-months, he had outgrown his gluten, soy, and tuna allergies… opening some doors for us. But his nut allergy seemed to get worse and worse. At this point, getting a kiss from someone who had eaten nuts hours earlier had become a life or death situation. Because so few people have had to deal with allergies of this severity, we struggled to keep our son safe. We had family telling us we could come to parties, because they would be nut-free, when they were not. We had friends lecturing us on keeping him too sheltered. It was a lot to process, and we have just a few people around us who fully grasped what we were going through. Until you have seen a child have a serious allergic reaction, you see them struggling to breathe, their face swelling, the absolute fear in their eyes; you cannot fully comprehend the gripping fear we live with.
Now, our boy is three. He knows there are foods that he cannot eat, and for the most part, he is fine with that. Once in a rare while, we have a little meltdown because he wants something he cannot have, and it shatters my heart. His older sister is his best ally, keeping the teachers and anyone around him in check, making sure they know about his restrictions. He is currently allergic to all dairy, eggs, coconut, tree nuts, peanuts, chickpea, and flaxseed. We have found a pre-school that is 100% nut-free, and allergy aware. They are super careful with all his allergies, and we work together constantly to come up with ways to make my boy, and the other children at the school with allergies, feel included. But there are times where accommodations simply cannot be made, and this will be a fact of life for him… it is hard for me as a mother to watch, but he has to learn. This is his life.
The hardest part of this journey is relying on other people to be understanding, and empathetic to our “normal.” The most common thing I hear or read is “not my child, not my problem.” This is a train of thought that I cannot quite wrap my head around. I assume its just a matter of being unfamiliar with how serious and deadly food allergies can be, and hope its not a blatant lack of compassion for a child’s life. If you are reading this, and agreeing with that previous statement, I would like for you to think of it like this: to the parent of a child with life threatening contact and/or airborne food reactions, their child’s allergen(s) is like a loaded gun. Imagine a loaded gun, in the hands of a child, at the playground; you see it, and you panic. You know that this is a life or death situation. Maybe the gun doesn’t fire, maybe nothing happens, but it is not a risk any parent I know would be willing to take. This is what it feels like for a food allergy parent, every time we go somewhere with food. Parks, schools, parties, even shopping carts… all potential loaded guns to our kids.
For those of you who are empathetic, there are easy things you can do to help!
- Encourage personal hygiene – wash hands and face with soap and water after eating. If you are out, and do not have access, use a baby wipe! Hand sanitizer is great for killing germs, but does NOT remove food compounds.
- Know the top 9. 90% of all food reactions are to the top 9 reactive foods: Dairy, Egg, Soy, Wheat, Shellfish, Fish, Peanuts, Tree Nuts, and Sesame. Think of these when you are packing snacks for the park, or school events.
- Do not allow kids to play on playgrounds WITH food. Ask them to sit away from the play areas, eat, and wash-up after. This helps keep the playground inclusive, and free of bugs.
- Ask questions. If you plan on sending anything into the classroom with your child, ask the teacher if anyone in the class has a food allergy. Food allergic children are often left out of celebrations, because food is typically a big part of the fun. Providing a safe snack, or food alternative (small toy, crayons, light stick, etc.) allows everyone to feel included.
- Talk to your child. Explain food allergies, the risks, and different ways we can keep our friends safe and included. You will be surprised at how understanding children can be, compared to adults. 70% of school age children with food allergies have reported bullying, as a result of their allergies. Education and inclusion from a young age is incredibly important.
I mentioned above that every time we leave the house with my son, it feels like a game of Russian roulette. Will today be the day I have to stab my son in the thigh with a big needle, call 911, and hope for the best? Will today be the day the medicine doesn’t work, and we lose him, like so many food allergic children have been lost? I know that might sound dramatic to someone who has never had to think like this, but it is my reality. That is why I need help. I need you to know that we, as food allergy parents, do not enjoy having to make traditionally food-based celebrations treat free, or changing what you can and cannot send your child to school with. In fact, I feel sick to my stomach each time I have to make a request like that. I dread the comments, feedback, and pushback. But this is life or death, not a matter of convenience. Not feeding a child their allergen is simply not enough to keep some children safe. It just isn’t. This is a disease that can very easily harm or kill a child, and it requires teamwork to keep these kids safe and included. Inclusion is something we will constantly struggle with, as food allergy parents. But compassion and empathy from the “village” around us makes it a lot easier. Imagine this were your child… you would do anything to keep them safe.
My hope is that you read this, and you see me, and every other food allergy parent out there doing what they have to do to keep their kids safe and included.