I didn’t fully understand food allergies until they hit my own family. I always followed and respected the rules of course, and I grasped the severity of the impact of not doing so. I just didn’t quite comprehend the fear that penetrates a food allergy family, and how utterly terrifying it is to witness your own child have an anaphylactic reaction.
Neither my husband nor I nor anyone else in our families have any food allergies. We were completely taken by surprise. As I’ve talked with other parents, I’ve learned many of them are in similar new-territory scenarios. So I decided to share our experience, in hopes that others will find it relatable or helpful to be on the lookout for.
Sixteen months ago, CJ (our oldest) had a severe anaphylactic reaction out of nowhere. Not just breaking out in hives. True anaphylaxis. By the grace of God, my parents were there with me. Maybe because we were putting our house on the market 48 hours later and they were helping to move stuff / declutter / stage, because things always all happen at once.
It was right after dinner time. CJ first complained of sudden back pain. He threw himself down on the floor, writhing in pain, arching and grabbing his back and moaning. Then his stomach hurt. We led him to the toilet, but no relief. We took him back to the couch and gave him a bowl to throw up in. Then I noticed his lips. Puffy. Pink.
I wish I’d been more informed about allergies. I didn’t realize how bad this was getting and how rapidly. I called Charlie, told him what was happening, and that we were going to take him to the hospital. “Are you sure you should take him, not call 911?” We live seven minutes from a hospital and I thought I could get there more quickly than an ambulance to us. I should have called 911. This goes through my mind all the time… we were lucky, we live so close. Please don’t judge me, I’ve learned. But we should have called 911.
My mom and I grabbed CJ and the baby — just six months old and exclusively breast fed, wouldn’t take a bottle, so I didn’t think I could leave her home with my dad — and jumped in the car. We’re driving, and the coughing started. You could see the panic in his eyes, he couldn’t catch his breath. My mom turned around and held his hand, kept him calm. I called 911 from the car, panicked; the operator kept me calm. We arrived, my mom got out of the car before I had it in park, and had him inside the Emergency Department before I could blink. I turned off the car and ran in with the baby. They had him in a bay already. The doctor turned to me: “Mom, it’s okay, he’s still coughing. We’re about to do a lot, and it’s going to be fast. Shots of Epinephrine, then more shots of steroids. Sit here with him on your lap and hold him tightly.” My mom took the baby from me.
The shots, while they hurt him, weren’t awful to watch, because I knew it was saving him. CJ understood, too, that they would make him better. I cried out of relief when he got the medicine that would save his life. When he vomited everywhere, I was so grateful he was ridding himself of whatever toxins were in his body. The IV was the hardest part, because he was more aware at that point and did NOT like that needle. A few minutes rest and a splint later, they got it in him. He’s still terrified of needles.
We thought it must have been the Chinese food leftovers he’d eaten for dinner. The nurses and doctors speculated, “Oh, it must be the MSGs, you never know what’s in Chinese food.” I threw away the leftovers when I got home, and I’ve avoided Chinese take out since.
But CJ self diagnosed. On the car ride home with Charlie — who’d come to the hospital immediately — CJ told him, “the chocolate made my throat itchy.” He’d eaten a chocolate after dinner, a gift from a music classmate for Easter. “It made my throat itchy last time, too.” A week before, after music class, he’d been awake for hours complaining of his throat hurting, coughing… we thought it was his seasonal allergies, gave him his inhaler, eventually got him back to sleep. Little did we know, that was his first allergic reaction. They get more severe each time. In his case, severity went from zero to sixty.
We checked the chocolate: It included tiny amounts of almond and hazelnut. Hm…
Fast forward two weeks: Our first visit to the allergist (side note: that was the earliest we could get an appointment, so you better believe we watched his every move, every bite of food like a hawk until we knew what caused the reaction). We did a blood test, because he’d been on antihistamines and you can’t do a skin prick test. Downside: you wait a week for results. Upside: You get exact results. The allergist didn’t think it could be the nuts — how could he have that severe a reaction after he’s eaten chex mixes and Nutella and ice cream and more his whole life, and never had a problem? There was just a trace amount in this piece of chocolate.
His blood work showed allergy to all tree nuts, with four extremely high — hazelnut, pecan, walnut, and macadamia. Level V on the scale of O to V. The macadamia nut level was the highest his allergist had seen domestically.
It’s been a journey. We’re equipped with EpiPens. We’ve learned to read the fine print on labels to find potential cross contamination warnings. We’ve stockpiled our freezer with cupcakes to send to birthday parties. We trained our family on how to prevent, identify, and treat reactions. We’ve learned to ask before every playdate if the parent is comfortable with his restrictions and using an EpiPen. We’ve forgotten and driven back to leave EpiPens on playdates. We’ve freaked out when a babysitter gives them dessert, even though we know she triple checked ingredients.
We also do food challenges. This means, we take the tree nuts for which he has the lowest allergy levels and spend a morning at the allergist testing his reaction to them. You start with a tiny dose and work up, seven total. CJ starts with a breathing assessments and vitals, then after each dose he waits 15 minutes, then another five minutes of vitals and physical checks for reactions. If he passes, he moves onto the next dose. After completing all, you wait another 1.5 hours to see if he has any reactions.
We’ve done two now, for almond and cashew, and he’s passed both (phew!!!). They’re time consuming and take a lot of effort — taking him off antihistamines for a week in advance, planning around days off of school and when he can handle the seasonal allergies alright without antihistamines — but the hardest part is fearing the reaction. We’ve been so lucky that he’s passed (his sister, not so much… she reacted on round 6 out of 7 to peanuts, after I’d kept her contained in a small room at the allergist office for three hours at age 8 months. ROUGH). But we’re determined to keep exposing him to the tree nuts he can tolerate.
What’s next? We have no freaking clue. We know that the reactions increase in severity each time, so next time it’ll be worse. But, we just did his annual bloodwork, and his levels for those four severe nuts went down! From Level V to IV. So still high, but maybe they’ll go away as bizarrely as they appeared?!? And now we’re prepared should this show up in either of his sisters, or if we happen to be with other children who have an allergic reaction. I’m so grateful that this is an issue for which we have life-saving medicine on hand.
I can’t tie up this story with a pretty little bow and say it’s done. It’s ever evolving, and we’ve learned just how much unknown there is about allergies.
Aug 20, 2018
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