**** THIS IS MY PERSONAL EXPERIENCE WITH ANAPHYLAXIS AND FOOD ALLERGIES. THIS IN NO WAY SHOULD BE CONSTRUED AS MEDICAL ADVICE. IF YOU OR ANY OTHER PERSON HAS MEDICAL CONCERNS, CONSULT WITH A LICENSED PHYSICIAN. DO NOT DELAY IN SEEKING MEDICAL ADVICE OR ATTENTION BECAUSE OF SOMETHING YOU MIGHT HAVE READ ON THIS BLOG OR ANY LINKED MATERIALS. IF YOU HAVE A MEDICAL EMERGENCY, CALL 911 AND SEEK MEDICAL ATTENTION IMMEDIATELY. ****
Before my little dude was diagnosed with an egg allergy, I’m going to be honest with you. I didn’t pay attention that much to food allergies. I had some friends that dealt with it, sure, but they were all adults and I frequently forgot and offered them pecan pralines when they were allergic to tree nuts. I didn’t do it maliciously; I just didn’t understand the seriousness of the entire ordeal.
When we went to the allergist nearly a year ago, I was devastated to find out that LD was allergic to eggs, but on the bright side, the allergist told me he wasn’t anaphylactic to eggs. He just had uncontrolled eczema. Identifying the egg allergy would help with that. “You’ll probably never need this,” he said, as he wrote me a script for an EpiPen, “but it’s better to have it for your own peace of mind. Just avoid eggs, and hidden eggs in things. Baked eggs are safe. 350 for 30.” And with that, he shooed me out of the office to get ready for the next appointment.
Um. Baked eggs. Baked in things? One egg for 350?? What about two eggs- does that need to go longer? I quickly joined a Facebook group about kids with egg allergies to get some more information (more about why I avoid Facebook Mommy groups later, but for parents of kids with allergies, I’ll definitely suggest making an exception.) I was provided with a wealth of information. Things I didn’t even consider in the rush of thoughts in the doctor’s office quickly went on my list. No mayo. Good- no one in my house eats it. Easy to avoid. No ranch with eggs. More tricky, but I can research a safe ranch. Fine. No cookies with egg. WHAT. WHY. Oh, they’re not baked long enough. Makes sense. No pancakes or waffles- well, this is sad. What is this child going to eat for breakfast? But you know, at least he’s not anaphylactic to it. We can do this.
For the past year, we’ve learned and figured out how to navigate this allergy. We’ve discovered what’s safe and what’s questionable (avoid those!) We got lulled into a false sense of security.
Two weeks ago, I gave my kid a homemade apple dip. Obviously, there weren’t any eggs in it. All the ingredients in it were things he’d eaten before. Peanut butter, honey, and cinnamon. He got less than a half a teaspoon before he started scratching his eyes. Then started scratching his mouth. Hmm.
You know, he has eczema on his eyelids (poor soul). Let me give him some Benadryl (allergist okayed it if he was flaring up) and see if that helps. Only it didn’t. He got red all over. Hives everywhere. His entire face began to swell and his eyes began to shut. And I knew. I was panicked, but I knew in the pit of my stomach. I was on the phone with a doctor I know who calmly and immediately directed me to give him his EpiPen and call 911. I should’ve known that without making the call, but I had to be sure. WHERE’S THE EPIPEN? WHERE IS HIS BACKPACK, DEAR GOD WHERE? We were FaceTiming my husband on my laptop, and he was watching all of this unfold in horror, unable to help from his hotel out of state. I am frantically trying to get to the Epi. There it is. I’ve trained myself so many times but oh my God, what do I do? He’s clawing his throat. His eyes are shut. I yank down his pajama pants and administer the epinephrine. He’s screaming because Mommy just stabbed him and is holding a needle in his leg.
911 runs me through questions that I’m not even sure I’m answering correctly. Please just send an ambulance. Hurry. What in the world happened. He’s eaten all of those before. OMG, his airway. His face is so swollen, but I’m starting to see his eyes open a little more. The widespread redness is starting to fade but he’s obviously not okay. WHY IS THE AMBULANCE NOT HERE YET.
After what seems like an eternity, someone from the fire department shows up. I run outside with him and hand him over. Please make sure he’s breathing- please make sure I gave him the epinephrine in enough time to survive. I’m marginally aware of the tears streaming down my face and the intermittent sobs escaping my mouth. “What did you already give him, Mom? He’s okay- he’s looking good. Some wheezing and his face is swollen, but he’s looking good.”
“Epi and five ml of Children’s Benadryl. I don’t know what he ate– he’s allergic to egg but he didn’t have that. Everything he had, he’s had before and been fine. I don’t understand.” I’m rambling.
“Okay, good, sounds like you did what we would’ve done. He’s still going to get an ambulance ride to the hospital, but you did the right thing, Mom.” We load my two-year-old up for his first ambulance ride. Do I have a hospital preference? I don’t care, just get him to the doctors. He’s hating all the wires, but this is a cool ride. His face is 80% better but it’s still swollen. He doesn’t look like himself. They ask me how long ago I gave the EpiPen. I check my phone to see the call to 911 and realize that this whole experience has taken only minutes. They got to me within minutes. They give him more meds at the hospital, observe us for a while, and send us home with more prescriptions than I know what to do with. “Watch him closely for the next several days. He can have a rebound reaction and it can be worse.”
After the longest week of my life watching my son, and being terrified of feeding him anything, we make it back to the allergist’s office. I’m petrified they’re going to tell me he’s allergic to peanuts. Peanuts are everywhere. Peanut oil is in so many things. Peanuts scare me more than egg, but the unknown scares me more than either of those.
It’s peanuts. He’s touch reactive and obviously can’t ingest anything with peanut. We have to let the family know; they all love peanut butter. He can’t be around them on days they’ve had it. They have to make sure their clothes don’t have any residue. Everything in their kitchens has to be disinfected; toys too, if they have kids. We’ve already thrown the peanut butter out at our house, but we’re cleaning again, just to be sure. We have to check all the labels. Cross contamination. This is more serious for us than the egg allergy. We have to make sure the places we go out don’t have peanuts. And the places that don’t have peanuts we still have to make sure they don’t fry in peanut oil. I join another Facebook group.
We’re learning to navigate this new path with as much grace as we can muster. I struggle with extreme guilt– I was the one that put the dip in his mouth; it was my fault. I’ve ordered the medical bracelet and the stickers and the IDs for his bags. I can’t be worried about hurting people’s feelings when it comes to my son’s safety. He comes first. It’s his life on the line. My legs are bruised from endless EpiPen training. Over and over, until you get it. If you’re around my son, you’re getting trained. I’m sending out infographics on how to recognize anaphylaxis. I’m grilling preschool directors to make sure he can be safe. I’m chanting over and over, to anyone we’re talking to that visits with him- “If in doubt, Epi. Using the Epi won’t hurt him, but not using it can kill him. You can’t wait for 911. Call 911 after you give him the Epi.” And I’ve never been sorrier in my life.
I’m so sorry that I didn’t keep up with my friend’s allergies. I’m so sorry I wasn’t more aware. I know now. I’m sorry it was just a side note for me; it wasn’t intentional, but I’m sorry for not putting your safety first. I’m sorry. I know better now. I’m sorry. If you know someone who has a food allergy, please take it seriously. Please don’t be casual about allergen exposures. It can cost them their lives. If you’re not sure what you should do, ask! Get educated. Check out FoodAllergy.org for more resources. Ask your friend again; I promise they won’t mind.
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