I had no idea what I was in for when we first found out my daughter has life-threatening food allergies to peanuts, tree nuts, eggs and milk. And while food allergies definitely became a big part of our daily lives, after about a year we found a “new normal” and most of my energy was spent on the daily management of food allergies (the food, the safety, training other people).
Unfortunately, over the past week, we’ve had two food allergy scares that have really thrown me for a loop. One was a call I received from daycare worrying about a possible food mix-up. Everything turned out okay and Avery didn’t have any symptoms (which leads me to believe she didn’t get the wrong food after all), but the fear of our daycare provider and my need to stay calm and give information and instructions really took it’s toll on me. After I got off the phone, I broke down in tears. It was my first emergency food allergy phone call and I realized the gravity of how scary it is when my child’s life is at stake. I also flashed forward to her attending school someday and losing even more control of her environment and the realization that I’ll probably get more of these emergency calls. So tough.
The next morning, we had a REAL food allergy scare when Avery had a serious reaction while eating watermelon. She ate a slice with no problem, but after she started eating a second slice (from a different portion of the watermelon) she began complaining almost immediately of being itchy. She had a minor rash (that we were just at the doctor for the night before) so I thought it might have been from that. Then I watched her get down from the table and lay on her back trying to roll around and scratch her back using the carpet for relief. That jolted me into action – my child has NEVER done that before and it was as if she was an animal with sounds and movements trying to get relief. I looked her over and she was turning into a giant, red, itchy mess. Her entire back was bright red and puffy, the back of her neck had a hive on it, her mouth and neck were red, there was a red splotch on her forhead, her chest and her stomach.
I scooped her up and ran for the benedryl, the hydrocortizone, the baby wipes. I quickly wiped her down (in case any of it was from the juice of the watermelon – a contact reaction) and wiped some hydrocortizone ointment on the most angry part of the red area on her back. Then I wrapped her in a blanket and tried to give her benedryl, which she spit half of it out. She was upset and crying and flailing about because she was so uncomfortable. I was trying to stay calm but I was starting to realize that this was a real food allergy reaction and how could it be from watermelon? I was confused and disoriented and my brain couldn’t logically understand because she had not eaten peanuts, nuts or eggs. She was eating fruit, at home, where everything was safe.
I calmed her down by holding her and singing, but knew I needed to get more benadryl in her – I got another dose and convinced her in the most serious of tone that she had a choice, to drink the benadryl or go to the doctor. She’s totally freaked out by doctors right now and I knew she wouldn’t want to do that (because of all the blood draws, shots and exams she’s had lately – makes me so sad), so it scared her into taking the medicine without spitting it out. In hindsight, although that worked to motivate her, it wasn’t something I could really stick to. I knew she needed the medicine ASAP and it was either that or the epipen, not a trip to the doctor.
I watched her for other symptoms as my thoughts raced- no coughing, no eyeballs turning red or rolling back in her head, she seemed alert, didn’t talk about her tongue or mouth being scratchy (and I didn’t think to ask). In less than 5 minutes all the redness was lightening up and she asked if she could go play with her brother. I said yes. And sat in the rocking chair in her room a bit stunned by what had happened. What on earth had just happened?
Keeping my eyes on her and checking her skin constantly, I called the allergist’s office and then my food allergy buddy/mentor. And they both said the same thing – either it was cross contamination from the watermelon being pre-cut at the store (it was a 1/4 melon) or she could be allergic to watermelon now. The only way to know for sure is to get her tested for watermelon. Evidently, anyone can develop food allergies to any food at any time, even if it was eaten safely even the week before. I called her dad to talk about a plan. Obviously no watermelon for now. I called our daycare provider to talk about next week.
I have honestly never thought about pre-cut fruit being a concern for food allergies. I would be worried if we were at your house and would give you the third degree about how it was cut, with what knife on what surface and were your hands clean… but I never thought about it at a store. Why not? I had never read it in any books… I have no excuse, other than it never seemed risky to me to buy a pre-cut 1/4 watermelon or pre-cubed mixed fruit. I have bought it this way many times over the past three years, although it was my first time buying pre-cut fruit from this particular market. I spent time on the phone this morning with the store manager who explained their practices for cutting watermelon. It all sounded very legit and it didn’t sound like there was an opportunity to be cross-contaminated. But… despite his assurances, it’s still a possibility. As is the fact she could have suddenly developed an allergy to watermelon, which is almost scarier to me to absorb the fact she could be allergic to more foods now and in the future.
Last night Avery asked me a few questions about what happened with the watermelon and why she had a reaction. Is she allergic to it now? (I don’t know.) Maybe her brother touched something unsafe and then touched it (wanting to blame someone — but this didn’t happen). She’s was trying to figure it out – just like me. I see so many of us in the food allergy world putting on our investigator hats after a food allergy reaction - so much time trying to dissect what happened so we can prevent it from happening again.
If we stop investigating for a moment and absorb the reality of what happened… the enormity… the fear of ”what could have happened” and the “how could I have let this happen” … it can be overwhelming. As I said on Twitter last night, dealing with life or death situations (daily!) with a child takes parenting to a whole ‘nother level.
It’s kind of like busy parking lots. I hate those, too. I always make my kids hold onto me (and I hold onto them) as we walk through parking lots. The daily practice of living with food allergies is like constantly being on guard in a parking lot. Worried about safety, things out of your control and always needing to be on guard. And then there are those moments when you get separated from your child and a car is coming straight at them (this has happened to me before). THAT is the fear I experience, physically and emotionally, during a food allergy reaction. My adrenaline rushes, my animal instincts to protect my child takes over and my mind shuts off.
Making it to the other side of a food allergy reaction successfully (meaning nobody died) is like the sense of relief when you grab your kid BEFORE the car in the parking lot hits them. Relieved, but still so freaking traumatic because you realize how high the stakes are… how close you came to losing your child.
I hate to end this on a depressing note. Of course there’s hope and we’ll get back to normal soon and we’ll be okay – but right now, today in this moment, I am a bit beaten up by the realities and emotions of living with food allergies. But now I’m going to go put on a smile and take my kids to a movie theatre – smuggling in safe treats for Avery, hoping the last person who sat in her seat didn’t eat peanut butter cups, and holding on to them tightly in the parking lot.
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