As a food allergy parent, there are moments you start to subconsciously file away in a little box in the back of your mind. The initial food allergy diagnosis (you can read our story here), first bites of food that caused minor reactions, first bites of food that beautifully don’t cause reactions, the first year of holidays and celebrations where you meticulously plan and prep and pack a whole separate menu for your child for each event. Then of course, there are the moments in the back of the box, in the red folders, the memories that cause great pain and fear to rise up. The anaphylactic reactions. We have three of these such moments behind us, and I can still feel each of them as if I’m there experiencing it all over again. It’s funny because these memories are so clear and vivid, and yet at the same time spacey and out of body-esque. Can’t reconcile the two, but here we are.
Our most recent anaphylactic reaction our precious daughter had was a mere two and half weeks ago as I write this. Fresh on my mind, sharing is therapeutic and hopefully helpful for others who dread the day it may happen to them.
We were out for dinner at a restaurant we frequent often. A favorite little neighborhood burger joint, the kind of place where you could easily get to know the community you live in just by showing up and sharing a hello. It’s located on our quaint main street, a little stretch of businesses starting to thrive in our tiny southern town. As I said we’ve eaten here multiple times before, and my daughter has safely had the burger with ketchup and pickles with a side of fries. Every time we’ve come, we reiterate her allergies, ask for a change in gloves and separate sanitized cook and prep stations, the whole deal. We sat down to eat, and as I always do, I watched my daughter like a hawk. Trying my best to engage with the friends we were eating with, but never fully turning my attention to the conversation. Going out to eat is always a struggle, you want to enjoy it, but you’re split down the middle focus-wise making sure to watch for any sign of accidental allergen ingestion. (Tell me it’s not just me…) My daughter ate almost all of her fries just fine and moved on to her burger. In hindsight, I knew something was off before she even said anything, I noticed her face looking grievous as she ate her burger.
Three bites in, and everything shifted so quickly. She looked at me, that brave almost 6 year old precious face, and I could tell it was happening. I asked if she was okay, but the words that seem to stop time came out of her mouth “Mommy my tongue is itchy, and my throat is closing”. To hear her say that, I still get a knot in my stomach thinking about it. I immediately grabbed her AuviQ bag, took her by the hand out of the restaurant and laid her on the sidewalk, legs elevated. Her face was red and covered in hives, the skin around her nose and mouth were white as a sheet, and her lips had bubbly red hives all over them. At this moment emotion came over me and I began to cry. Trying my best to hold it together, but people, I’m a 6month pregnant mama who cries at everything these days, it just wasn’t in the books to stay composed. I administered her AuviQ and within minutes, her symptoms began to subside. The relief that came over me in that moment was tangible. I think one of my biggest fears is the epinephrine not working. So to see visible signs of the anaphylaxis subsiding was a dream. Thanks to some kind strangers calling 911, the ambulance arrived soon after. She was taken to our local children’s’ hospital for monitoring of a biphasic reaction and we went home later that night, pumped full of steroids and antihistamines, with prescriptions to go. She was fine. She was okay. She was home.
As I think back over this day, there are a few things I can share in hindsight to hopefully help others learn from our situation. First, always have your epinephrine with you, epi first, epi fast, and carry two. It cannot help you if you don’t have it. Don’t leave it in your car, bring it in with you, time of administering after ingestion is so very important. Don’t second guess, if you think epi is needed, give it. In situations like this, unnecessary epinephrine is less dangerous than no epinephrine with anaphylaxis brewing under the surface. If two systems are affected, EPI!! Know your allergy action plan decided with your allergist and stick with it. The relief your child receives from that shot is monumental. Also, a little known ridiculous fact is that in some counties, not all first responders are legally allowed to administer epinephrine, some ambulances don’t even have it on board. When we put my daughter in that ambulance, my husband took her 2nd AuviQ with him, in case she needed it. The EMT’s reaffirmed this knowledge, they can help someone administer their OWN auto-injector, but had she not had it on her, the ambulance that arrived to pick her up would have had to call a more qualified first responder to come and administer more epi had she needed it. Always carry two.
Second, positioning. I should have had her lie down right where she was and not walk outside. A drop in blood pressure is a symptom of anaphylaxis and for some just standing up makes the reaction that much more severe. I didn’t want her younger sister to see what could happen as she has a food allergy as well, but I should have at least carried her and tried to keep her level. Also, as I administered her epi, I elevated her legs afterward. There’s some research showing this helps blood flow to the right areas, I’m not a scientist, but it wasn’t a hard step and it made me feel like I was giving everything my best!
Third, my emotions were clearly all over the place. My daughter even asked why I was crying in the moment, I didn’t have an answer prepared. After processing a bit, and chatting with my wise mother as I drove to the hospital that night, I later told her I was sad to hurt her with her needle, even though I knew it would make her feel so much better. We haven’t told her she could potentially die from allergies yet, let them be little, so I wasn’t going to tell her the truth that I was afraid of losing her. This being said, counseling is in our future. I’m not sure to what level, but know that after these moments, counseling is 100% normal and beneficial for all involved, especially as smaller children grow and become more aware of the threat to their life. You do not have to process this alone!
Finally, never assume that because you’ve eaten at a restaurant before, you don’t have to be as informative as you can each time. I think back over how I ordered that day, and I asked for changed gloves and separate cooking and prep stations, but I didn’t walk through the steps verbally like I had before. Specifically I didn’t ask for her burger to be cooked in a foil pouch all it’s own. I assumed, wrongly, after so many times eating there that the cook would understand what “no cross contact” meant.
The silver lining to all of this is that the owner of the restaurant reached out to me the day after and we have been in talks with helping them develop a new allergen menu, training and protocol. Surprisingly enough, there are few states with any mandated legal requirement for allergen training. Up until this incident, this restaurant owner of 4 different restaurants, had no clue that anyone could have a life threatening reaction simply from their burger touching residue from their allergen. He didn’t know this type of reaction could happen from anything other than peanuts. I’m not kidding.
This Food Allergy Awareness week/month, understand how little information is known by the non-food allergy world (and sadly not known by some IN the food allergy world) about the actual dangers of having a food allergy. Take the time to advocate somewhere; on your social media, at your kids schools, or maybe speaking with the manager of your favorite restaurant. You’d be surprised how one small act can make waves of change for the better for this food allergy community we’re in. Here’s to safe eating, here’s to the day that more people genuinely understand than don’t, and until then, here’s to this community of food allergy sufferers. May we support, educate, and encourage one another!