This Food Allergy Life

lauren.JPG

Food Allergies showed up in our life suddenly, unexpectedly. Prior to life as a food allergy mama, I didn’t really get it. When Will, our oldest, was 13 months old and started in childcare, we received a note home instructing us that nuts were not allowed in his classroom. We were given specific instructions to read food labels and ensure we packed lunch and snacks that did not contain nuts. At 13 months old, the floodgates of food choices had just opened for Will, so I was a selfishly bummed that he couldn’t have a PB&J in his lunchbox. Looking back now, I empathize with that family. I know the conversation they had with the daycare and teachers to make arrangements to make sure their 13 month old baby was safely navigating food allergies while away from home. It kills me that it ever crossed my mind to be annoyed to check the label of a granola bar box. It was the least I could do…

The food allergy bomb officially dropped on our house about 2 years later. I’ve heard of other families discovering their child’s allergies with symptoms of eczema, asthma, or digestive issues. A grueling battle of trial and error, and stress. Did I mention the stress? The stress of trying to figure out why your child doesn’t feel good. The stress of wondering what you could have done differently to prevent this? Maybe I shouldn't have eaten peanut butter by the spoonful while I was pregnant.

For our family, we found food allergies a little differently. At four months old, we discovered Lauren was allergic to peanuts with an outbreak of hives; raging, red, bumpy, violent hives. Will had just finished peanut butter toast and lovingly kissed his little sister. She instantly broke out on her cheek with swollen red hives that encircled her right eye and carried behind her ear. I remember every detail of that day, what she looked like, what she was wearing. I frantically packed her into her car seat, I would take her to our pediatrician just five minutes away. I snapped a few pictures, hoping it cleared by the time I arrived but wanting the evidence to share if they did. I needed the doctor to see what I saw. Can a four month old even have Benadryl? I didn’t know and I wasn’t wasting time on the phone or google to find out.

baby lo.JPG

Lauren, age 4 months

This is about the time that we found out our sweet girl had multiple food allergies

After our visit that morning with the pediatrician, he advised us to clear the house of peanuts as he was certain she was allergic, and connected us with an allergist for further testing to confirm. Still in a daze of not understanding food allergies and how different life would be in an instant, I went home and tossed the peanut butter jar. Somehow, I convinced myself that this was all temporary. This would just be a short-term thing; she’ll grow out of it. After all, she hasn’t even had her first birthday. She’s had little more than breastmilk and sweet potatoes, she’ll grow out of it. And that’s what everyone told me.

Shortly before 12 months old, Lauren was tested with the skin prick test for the top eight food allergies. We left that day knowing she was allergic to peanuts, treenuts, eggs, and soy, four out of the eight top food allergies in the US. Later, after trying sunflower seed butter as a peanut butter alternative, we added sunflower oil to the list of critical food allergies. Every time she tried a new food, I would feel anxious. We’d watch her as she ate, inspect her mouth, face and chest for hives. Is she choking? Is she doing the baby gag thing because she’s learning how to eat or is it an allergic reaction? Maybe we’ll skip that food for now.

Outside of our home it became very clear that the rest of the world didn’t really understand food allergies, just as I had not a few years prior. Growing up, we didn’t really know kids with allergies, if we did it was rare. We were trying to sort out this new life, while trying to explain and educate friends, family, and our own childcare provider. We were anxious and stressed out, to be honest we still are. We had been tossed into a world we knew nothing about but had to take instant action with limited direction. Learning to read food labels and trusting a manufacturer that what they’ve printed on the box is the truth; and at times going one step further to investigate the manufacturer to make sure that truth is truth. There are times when I feel like I have been holding my breath for years. There are times when I begin to feel comfortable in this new life, and just as soon as I feel comfortable enough to exhale, she gets hives or has a reaction to something we can’t trace. We have a system of double checking every label, even for the brands we trust. I could (and will) write a whole separate blog on dining out and navigating waiters, chefs, and the disclaimer on the menu. This is our life. I take in one last bubble of air and hold it. I know in some ways I have to let it go, I have to relax. I also know our little three year old depends on us to read those labels and ask the questions for her, to keep her safe.

We have settled into this new normal and accepted that we will be managing food allergies through all of the seasons of life with Lauren. We continue blood tests every year in hopes she will grow out of the allergies, and she has outgrown the allergy to soy. While it’s easy for me to look ahead and panic about food bullying in elementary school, kissing boys in high school or going off to college and OMG what if she gets drunk and eats a Reese’s, that is the stuff I have to let go of. Right now, Lauren is in preschool. This is the season that we’re in and I can handle this (most days). I have to trust that I have a team of teachers who will take good care of her when she is at school and I’m at work. We have taught her to remind people to check her food, and she can rattle off her four allergies. She will very directly ask, “Did you check that?” in her sweet little Maine accent.

We navigate food labels, and trying to find variety for her lunch box. We navigate travel, airports, and the looks we get when we wipe down a restaurant table with our own Clorox wipes. We navigate friends and family, BBQ’s and special occasions. We appreciate the chefs who come to our table and hand deliver safe meals. We appreciate our friends and family who organize a holiday menu or a BBQ around safe foods. We adore our sweet nephew who asked for turkey and cheese so he could sit at the nut free table at school, and Lauren's grandmothers who have learned safe versions of old recipes.

I don’t expect everyone to get it, but if I can change just one person’s view on food allergies it’s worth it. There are millions of kids like Lauren, who will never visit an ice cream stand, or taste the sweet, sweet joy of a Starbucks coffee. It’s not a matter of getting a rash or an upset stomach, it can be life threatening anaphylaxis and we have to treat it that way. Maybe you’ll consider a nut-free snack the next time you fly, or happily pack sun butter & jelly over PB&J for lunch. I don't want Lauren to be defined as "the food allergy kid." She is sweet, funny and oh so spicy at times. She deserves the moon. For anyone who knows me, you may think I am nuts, with the label reading, the advocacy for inclusion, and at times the anxiety I carry. I hope this gives you a little perspective on food allergy life.

-kp