I know Mommy, sometimes things that are safe get allergies in them. Like when my gummy bears got allergies and we had to buy different gummy bears.” —words of wisdom from my three year old when I explained she had to add peanuts, peas, paprika and cumin to her allergen avoidance list
Somehow I thought (hoped!) it couldn’t happen to her ever again. After all, we are obsessively cautious about food allergies—we don’t let her eat in restaurants, we only buy food from companies we have interrogated in detail about every one of her allergens, we hover over her at social gatherings, we bring safe food for her everywhere, we don’t even keep her severe allergens in the house.
So we ALWAYS carry the EpiPen, but secretly hoped we’d never have to use it.
It had been three years since her first (and still most terrifying) anaphylactic reaction at nine months old to a bite of hummus back before we knew she had food allergies or had an EpiPen. Since then she had had a number of milder reactions (small clusters of hives on her cheeks), but nothing that seemed to fit the clear criteria on her Food Allergy & Anaphylaxis Emergency Care Plan for giving the EpiPen. She has also had some somewhat more severe reactions (vomiting and hives after eating a vegan cupcake that I MUCH later realized was nut-contaminated) that in retrospect probably merited the EpiPen, but I was too hesitant to use at the time.
(Before I continue—if you have food allergies and you DON’T have an EpiPen and an action plan such as this one from FARE—hound your allergist until you get one. Please).
And then the weekend before last, we were having a lovely homemade-from-scratch brunch with her weekly maintenance dose of peanut & almond butter waffles (you know, those ones I was so nervous about?) and a big side of kale with garlic, onions and tomatoes. This was because my daughter had passed carefully monitored in-office oral peanut and almond challenges over a year ago with no reactions to an entire sandwich worth of PB or a big cup full of almond butter, and so each week to maintain her tolerance we were told she needed to eat a certain amount of peanut butter. The food was so yummy I even Instagrammed my plate:
She usually eats three or even four waffles. But this time, she pushed her chocolate chip peanut & almond butter waffles away after eating just one and a half, and began to complain her tummy hurt. At first I thought nothing of it—she says that a lot, and it often means she needs to use the bathroom. And peanut butter can be hard on the stomach, after all. And we KNEW she was DEFINITELY NOT allergic to peanuts.
She DID have a small reaction to the same waffle recipe served with kale a few weeks earlier (a small cluster of hives around the mouth), but it didn’t occur to me allergies could be at work THIS time, because I had been fairly certain that cross-contaminated flour or a new allergy to the paprika I had sprinkled all over the kale had been last reaction’s villain.
But when she kept complaining for a few minutes and started to moan and seem rather listless and miserable, my food allergy mama radar went off and I hugged her to me, rolled up her sleeves and pulled up her shirt.
And there they were. Hives. Untold numbers of tiny little red hives all over her arms and hands and a few bigger ones on her belly as well. I called my husband over, and we quickly decided that this reaction — two systems affected, skin and gastric, and not localized at all — fit the criteria for giving the EpiPen on her emergency plan, even though she wasn’t having any of the scary swelling or choking or coughing she had had in her first serious reaction.
I grabbed the EpiPen Jr. twinpack from the bag, asked her to lie down on the rug, gently explained to her that I had to give her her EpiPen, and she began to cry. “Mommy, I don’t want to get a shot, I don’t want a shot!” (Kiddo really hates getting shots and blood draws, and I don’t blame her—she gets a lot of them).
But I told her I needed to stop her allergic reaction, and she seemed to understand and didn’t fight me. I took a deep breath, removed the cap, and firmly injected the device into her outer mid-thigh. It popped out just like the tester, and I counted out loud, slowly, to 10. She screamed and cried the whole time, but didn’t try to move away.
Meanwhile my husband called 911 and I began to cover my girl in kisses and soothe her and hug her (as she still lay on the rug) as he gathered up all our clothes and we got some snacks for her to have while sitting in the ER.
The reaction seemed to stop progressing, and when five big firemen showed up in our apartment to fuss over her and give her some oxygen, she said the EpiPen had helped her tummy feel better. They were quickly replaced by EMTs who assured us we had DEFINITELY done the right thing given her symptoms and took us all by ambulance to the nearest ER. In the ambulance she definitely started to perk up and even declared “Mommy, it’s so fun to ride in an ambulance!”
There’s not much to the rest of the WHAT of the reaction story—they monitored her carefully for several hours in the ER and gave antihistamines, but she didn’t need any more epinephrine or even steroids. She did have an unrelated fever of 101, a nasty cold virus we hadn’t realized she was incubating. We brought her home, snuggled her into bed, and let her eat dessert for dinner—a dairy-free sundae with bananas, Enjoy Life chocolate chips and homemade vegan nut-free cookies. I took a picture to show her worried grandparents she was doing better:
And I of course slept in her bed with her and held her through the night, listening to and being thankful for each breath.
But first I called the allergist, because I was burning up wondering:
What the heck did she react to?
The allergist on call at the Jaffe Pediatric Food Allergy Institute said we’d have to do some digging, but at the least to stop giving her peanut butter and almond butter until further testing—just in case. He also said her reaction to the waffles could have been especially severe this time because she also had a virus we hadn’t been aware of. And he suggested we re-examine all the food labels for missed contamination warnings.
I found a “made on carefully segregated equipment but in a shared facility with tree nuts” warning on her previously trusted brand of peanut butter and felt my heart sink—was this a result of my sloppy label reading? We had contacted the company (Teddie), but somehow we must have missed our usual process of reading every label before adding a “green light” sticker and adding to the pantry or fridge.
So the week went on, and I was a mess. I mean, once again I had FED something to my daughter that had sent her to the hospital. And the poor kiddo’s fever climbed to 104, and her eczema and asthma flared with it in a nasty tandem, and it was all anxiety and sleep deprivation and nebulizer treatments around the clock. There was no cooking to be spoken of and we ate a lot of random Sunbutter & jam sandwiches (from brand new jam jars never contaminated by the peanut butter or almond butter) and weird leftover items from the freezer.
And then just as I was starting to cope and get a handle on things and get back into feeling OK to cook for her again, she had ANOTHER reaction on Friday night. To a meal of plain white rice noodles (Thai Kitchen, I had called the company to confirm rice only), chicken and snow peas. A few minutes after beginning to eat the noodles and snow peas, she declared “Mommy, these noodles make my mouth feel yucky” and spit them out onto my plate. And then—hives. Just two or three near her mouth, but definitely hives. We didn’t Epi this time (or give Benadryl for fear of masking a worsening reaction), but we watched her very closely and were relieved it did not progress.
Rice noodles? Snow peas? I just wanted to pass out on the floor, because I really had no workable theories at this point.
But we had an upcoming appointment to do some allergy detective work on some other more minor reactions, and when it rolled around yesterday, I was nervous but hopeful. Based on my food diaries for all her reactions, we had SO many suspects on our list: peanuts (did her allergy come BACK despite maintenance?), almonds, canola/rapeseed (related to mustard, after all!), garlic, onions, paprika, cinnamon, nutmeg, cumin… the works!
At the allergists’ office, she bravely suffered through the skin and blood tests, though there was some more crying and bribing with DumDum lollipops.
The skin prick tests were disheartening. Our multiple food allergy list is so much longer now. In addition to the already nightmarish combo of milk, egg, sesame, tree nut, and mustard allergy, we now have to avoid peanuts, peas/snow peas/split peas/pea protein, paprika and cumin too. Some of those could be false positives, but we can’t risk them until she’s able to have an in-office food challenge months from now.
And it’s not over—we’re waiting on blood tests for canola/rapeseed, cinnamon, paprika, nutmeg and more seeds.
So I’d like to relax and feel like we have answers now—that this new, longer, harder list will protect her and all these horrible, scary reactions will stop. But instead I’m just confused and feel like I have more questions—and the doctors are a bit too. It is very rare for a child who has eaten a weekly maintenance dose of peanuts to redevelop a peanut allergy—but she got a VERY large “wheal and flare” to the peanut on her skin test.
The pea allergy is more of an immediate challenge than the peanut, since she hates peanut butter anyway and we’ve avoided it in the past. But because of peas, we’ll have to give up some of her favorite foods—her beloved Daiya vegan cheese is packed with pea protein, as are many varieties of Earth Balance Buttery Spread (though not the Whipped or the Vegan Buttery Sticks). Paprika and cumin are all over the place too—and also not part of “Top 8” label laws.
On the plus side, she tested negative to almonds, garlic and onions. Phew! (I mean, we’d avoid whatever we had to to keep her safe, but I’m glad we don’t have to go there yet.)
So, now I wait. And worry. And try to imagine how I will try to explain her complicated list of allergens to companies when I call to check that items are safe. And I think “she has so many now people aren’t going to believe it’s true.”
And I try to teach the little girl about all the new things she has to avoid now–that edamame, chickpeas and green beans are OK, but snow peas and green peas are not, and that remember all those times I told her she WASN’T allergic to peanuts? Well, sometimes allergies can change.
Tonight after I told her an elaborate silly bedtime story about polka dots escaping from her pajamas and dancing on the ceiling she asked me:
“Mommy, what happens when things that are safe turn into allergy things?”
I think she was wondering WHY. I wish I had an answer too.
P.S. Because so much is going on with us right now, I’m struggling to really find the time or mental energy to write up the blog posts or recipes I had planned. But I do still update Instagram and my Safe & Scrumptious Facebook page quite a bit, so visit me there!