7 Things Food Allergy Parents Want You to Know

I know what you’re thinking: not another food allergy post… and I would have thought the same thing three years ago. But now that I have two daughters with life threatening food allergies, I feel it is my duty to spread awareness about the seriousness of food allergies and how they affect one in thirteen children and their families in the US.

Since becoming a food allergy mom, I’ve realized that us food allergy parents tend to have a bad rap. We are that mom. You know, the one who refuses to drop her kids off at a playdate or complains to the preschool director when homemade birthday treats were served at snack time. So annoying, right? Again, three years ago, I would have agreed with you. But then my daughter almost died. From a bite of food. And if there’s one thing that ALL moms have in common, it’s the love for our children and that mama bear instinct to keep them safe.

So, with that in mind, here are some things that we food allergy parents want you to know.

1. We don’t know what caused our child’s allergy.

My husband and I have no history of food allergies. I had natural births. I breastfed both my babies. I was not obsessively clean with either of them. I did everything “right.” I don’t know what caused my daughters’ allergies, but I do know that it wasn’t anything I did. It took me a long time to convince myself of this, but I know now that it’s the truth. For every child with a life-threatening food allergy that was breastfed, you can find one that was formula fed. There is no consensus in the food allergy community as to what is causing the rise in food allergies, even among the leading allergists. So please, don’t tell me that I should or should not have vaccinated my children or used less hand-sanitizer.

2. Peanuts are not the only life-threatening food allergy.

Most people think of peanuts when they hear the words “food allergy,” but since joining the food allergy mom club, I’ve learned that you can be allergic to pretty much anything. My daughters eat peanut butter every day. Eggs (Rory) and milk (Scout) are our food enemies. When Rory was 15-months-old, she had an anaphylactic reaction to her first scrambled egg. Scout has never actually ingested milk. She is so sensitive that she reacted to her allergen through my breastmilk. She is also contact reactive, which means that if any milk proteins (from milk, ice cream, yogurt, cheese, etc.) come in contact with her skin, she immediately breaks out into hives. Her allergist assumes that she would have a very strong reaction if she were to ever ingest milk in any form.

3. We always have to be on guard.

I thought egg was a difficult allergy to navigate until we discovered Scout’s milk allergy. Milk is everywhere. We went to the library yesterday and there was a toddler with a sippy cup of milk sitting next to a young girl who was (messily) eating Goldfish Crackers and reading with her mom who happened to be sipping an iced latte. I am not being dramatic when I say every single one of those things could kill my daughter. I literally cannot take my eyes off my girls when we go out in public. Those cheese crackers that your son dropped at the park, and you brushed away with your sneaker? If my daughter happens to pick one up and put it in her mouth (like 18-month-olds tend to do) it would most likely result in a trip to the hospital. If your daughter ate yogurt before touching the stair rail, and then Scout happened to touch the same rail and then rubbed her eyes or put her fingers in her mouth? Hospital. Most parents don’t think twice when friends share ice cream or eat from the same chip bag, but I have to worry about whether or not this friend had eggs for breakfast or has recently touched anything containing milk. I can’t ever be lax, and it’s exhausting.

4. Cross contamination is our version of Russian Roulette.

Home is our food safe haven, but it takes a lot of detective work to keep it that way. I am willing to bet that if I were to ask fellow food allergy mamas what they wish other people understood about food allergies, they would say cross contamination. Just because something doesn’t contain our allergens, doesn’t mean that it’s safe for us to eat. All it takes is one rogue protein to cause a reaction. You may notice that many foods have labels with statements like, “made on shared equipment with peanuts and milk.” This means that there is a potential risk for cross-contamination, depending on the company’s cleaning procedures. Unfortunately, companies are not required to disclose whether or not their products are made on shared equipment with common allergens. This means that in order to ensure that the foods I serve my daughters are 100% safe and have no risk of cross contamination, I have to call or email companies and inquire about their manufacturing policies.  Not all food allergy moms do this. Everyone has their own comfort level, but to me it is not worth the risk. So, even though your homemade cupcake does not contain eggs, I still cannot allow my daughter to eat it because I would have to make sure that every ingredient you used was not made on shared equipment with her allergen.

5. The first day of Kindergarten makes us want to cry… for a different reason.

Just thinking about kindergarten gives me cold sweats. Kindergarten means trusting someone else with my daughters’ lives for 8 hours, every day. I understand that every parent goes through this to a certain extent, but life-threatening food allergies makes letting go that much more difficult. Already I wonder about things like birthday treats and pizza parties. I worry that my daughters’ teachers will forget their epi pens on field trips or the nurse will miss the signs of anaphylaxis and give the epi pen too late. And although I am grateful that my girls can safely eat peanuts, I wish that people were more aware of other life threatening food allergies. Many schools are peanut free now. Can you imagine if I asked a school to be egg or dairy free in order to keep my daughters safe? Last Friday at Preschool pick-up, there was a fire truck and an ambulance in front of Rory’s school. As soon as I saw it, my heart skipped a beat. I just knew I would find Rory unconscious in the nurses’s office, and I’m pretty sure every food allergy mom would have jumped to the same conclusion.  Turns out, the firemen were there for a non-emergency visit in the kindergarten classes. 

6. Epi pens save lives… but we don’t want to use them.

I carry 4 doses of epinephrine with me at all times. If my daughters were to have a severe reaction, I wouldn’t hesitate to use their epi pens, because I know that a shot of epinephrine will keep them alive. However, if we use the epipen, we have to call an ambulance and be monitored at the hospital for several hours where we will most likely receive an additional shot of epinephrine and a few doses of steroids. This is not a fun (or cheap!) way to spend a day. I say this because I have had several moms ask, “but you have an epi pen, right?” when I explain that my daughters can’t have a certain food due to cross contamination risks. Yes, we have an epipen, but we pray every day that we never have to use it.

7. Celebrations are hard, but we still want to be invited!

I admit that birthdays and holidays are some of the hardest days for food-allergy families. Celebrations mean cake and ice cream and other treats… which for us means eggs and milk… which means danger zone! And although it would be easier to just not attend parties and stay in our safe bubble, I don’t want my children to miss out on anything because of their allergies. We live in a world where our allergens are everywhere. That is life. For now, it is my job to keep them safe, but as they get older, they must learn how to advocate for themselves, and parties are a perfect place to practice these skills. So please, don’t leave my children off your child’s birthday invite list or assume we won’t want to come to your holiday party. And please don’t be offended when we ask a million questions about the food being served or show up with our own container of safe food and constantly wipe our children’s hands…because nothing ruins a celebration like a trip to the hospital.

Learn more about Food Allergies by visiting FARE, Food Allergy Research and Education Organization.