These are the 5 rules our food allergy family follows to teach our kiddos how to navigate life with food allergies and stay safe.
1. We Never Eat Our Allergens
This is rule number one and although this seems so obvious, it’s far from just that simple.
Kids are well, kids. Food allergies are a life-threatening medical condition that I as an adult am still processing the implications of for my child. And although I am absolutely amazed at the maturity and responsibility I am seeing in my kids, they are still kids.
Kids make mistakes. Kids don’t always think things through.
Let’s be honest, neither do adults!
One of the most frightening parts of food allergies is the incredibly high stakes. One wrong bite of the wrong food could trigger anaphylaxis, which can be life-threatening.
This is why clearly stating this rule to my kids is so important.
We do not eat our allergens.
There is NO circumstance where we eat our allergens. Here are a few circumstances I am thinking about that my kids might face in the future.
One is bullying. Unfortunately, food allergy bullying is a real thing. Kids could be pressured at school by their peers to “just try one bite.”
Comments like, “It’s no big deal,” “You’re a baby,” “You’re scared,” etc could all be used to taunt a child to try a food they should not eat.
Another scenario is just curiosity. I personally don’t know, and will never truly know,, what it’s like to grow up with a food allergy. That was not my experience as a kid.
I cannot pretend that I fully understand what that must be like for my son and daughter. I can imagine there is fear, along with a general curiosity about this “forbidden food.”
At a program I am exploring for my kids, I asked the director if they had experienced anaphylaxis and if so, what was the situation and how was it handled?
Full disclosure, I am a tough interviewer when it comes to programs for my kids.
I am THAT mom. No apologies!
The director shared that they have never had a child experience an accidental exposure to a known food allergen. One of the two experiences she shared with me was that an older child (pre-teen) had an anaphylactic reaction because the child knowingly ate the allergen because the child wanted to try a friend’s candy bar and did not think it would be a big deal.
Thankfully, the child recovered, but the story made me realize the importance of emphasizing this rule.
I want our kids to know that we never knowingly eat our allergens. It doesn’t matter what anyone says or how they are pressured. If they want to try a new food, we will find them a safe version.
2. No Epi Means Stop
One of the biggest actions we are modeling to our kids right now is the importance of ALWAYS having the EpiPen with us.
Katie actually teaches her kids that the epi is an “extension of them.” Everywhere you go, the epi goes too.
However, when I was a brand new allergy mom, it definitely took time to build the habit of always remembering to bring it with me. Ultimately, my kids will one day be responsible for their EpiPen so the habit building begins now.
We all make mistakes and there will be times when the EpiPen is forgotten. We want our kids to know what to do when that happens.
First and foremost, no epi means we physically stop.
It means that as soon as we realize that we don’t have the EpiPen, we stop what we are doing. The first thing we need to do is go get the EpiPen.
Furthermore, it does not matter what we are late for, it does not matter where we are going or how important the event is, and it does not matter if “it will be a quick trip.”
If the EpiPen is not with you, you turn around and go get it.
Period. No exceptions.
We are modeling this for our kids right now. We always check that the epi is with us before we leave a location. If it isn’t, we stop and immediately go get it.
There is no, “Oh, I’ll just quickly run through the store and then go get it”, or “I’ll just stop by and make an appearance, then leave.”
Again, no epipen means we stop what we are doing and go get it.
3. Wash Hands Before We Eat
What’s the best way to make sure hands are clean before eating? Good old fashion soap and water.
Hand sanitizer does not remove food proteins. It is great for killing germs. However, food proteins aren’t germs, so we don’t need to kill them. They need to be removed from a surface or from hands.
In this case, soap and water has been shown to be the most effective way to remove food allergen proteins from object surfaces and skin.
We wash up after playing somewhere public like the zoo, a playground, or museum. In particular, it is vital that we not forget to wash our hands before we eat.
One of our favorite ways to wash our hands out in public is with Suds2Go! They are a portable hand-washing system that our families have come to love. If you haven’t checked them out, we highly recommend this product!
4. No Label, No Thank You
Unless the food was prepared by someone we trust (aka Katie) or at a trusted restaurant, if there is no label, we say no thank you.
This is because, although people can be well-intentioned, if they are not used to prepping food for a food allergy need, it’s very easy for mistakes to be made.
Mistakes like, “I forgot butter was dairy! or “Oops there is almond extract in that” and so forth are just to easy, and the cost of an allergic reaction is too great.
And this doesn’t even begin to open the issue of cross-contact if that is a need for your family. People might forget they had prepared peanut butter cookies in the bowl with that mixing spoon prior to making your baked good, and the bowl or spoon weren’t cleaned properly.
For more on cross-contact, check out our post, “What in the World is Food Cross-Contact.“
Mostly, we encounter food without labels at events like bake sales or potlucks, social gatherings and parties, and neighbors who in kindness are bringing over a plate of cookies.
For most parties, we bring our own food. If there is a birthday party, we bring own treat unless we’ve worked with the host on a safe dessert.
We can still be a part of of these events, but that doesn’t mean we need to take a risk with the food. It’s important for our kids to know they have a safe way to participate.
5. You Never Have to Eat Something
One of my goals as a parent is that I equip my kids to feel empowered. I want them to feel strong, confident, and independent.
An interesting dynamic with food and food allergies is the social component. Food is social and different pressures can come with that.
For example, a neighbor bakes you a plate of cookies and you feel rude turning down their act of kindness. You’re at an event where food is provided or being served and you feel uncomfortable not eating it.
Whatever the case may be, I want my kids to know to their core that their safety takes priority. It takes priority over other people’s feelings, any pressure from an event, or any other social dynamic.
Another important part of this rule is to trust your gut. If something seems off, listen to your gut. I want my kids to trust their feelings and their instincts.
Some of you may remember this story from my family’s trip to Disney World and I want to share it again because it speaks to the importance of trusting your gut.
Disney World truly has some of the best protocols I’ve seen for food allergy safety. We rarely eat out at home and I really enjoyed having the “restaurant experience” with my kids while on vacation. Plus I didn’t have to cook for once!
But even in the best of places, you cannot let your guard down. You still need to advocate, ask questions, and ultimately trust your gut.
Unfortunately, we had a circumstance where I needed to trust my gut.The reservation was for a restaurant within one of the parks. I felt that I had done my due diligence.
The restaurant was a recommendation from other food allergy moms in a Disney Facebook group. I made a reservation ahead of time (essential or you may not get in). I indicated our food allergies on the reservation.
Then, I showed up early to speak with the host who reassured me to notify the server and we could go from there.
I got my little family situated at the table. When the server arrived and I began to explain our food allergy needs, I was almost immediately interrupted with, “There are no peanuts or tree nuts on the menu, except in the desserts.”
The tone was hurried and impatient.
It felt dismissive whether it was intended that way or not. He wanted drink orders and I simply asked for him to bring some waters, figuring I would deal with addressing the food allergies again when he came back and after I had gotten my kids situated at the table.
We ALWAYS speak with the chef so telling me the allergen isn’t on the menu except for dessert does not work for me. Changes happen, labels change, ingredients change, specials change, etc. Also, the allergen is also clearly still present in the kitchen if it’s in the desserts so I need to speak directly with the person preparing the food.
When the server came back to the table with the drinks, a gigantic dessert with what looked like had chopped nuts on top, was in the center of the tray. Our drinks were crammed in a circle all around the dessert. The one menu item he had just told us has nuts.
My stomach dropped.
As I watched him take the drinks off the tray and set it in front of my son, who has anaphylactic nut allergies, I instinctively moved the cup away from my son.
My brain was struggling to process. The server had just told us that many of the desserts contained nuts. Were those chopped nuts on the tray?
How did I feel about this? Was this a big deal? Was this still safe? Should I wipe the cups and then give it to my son? Should I ask for new drinks? How could this man bring dessert over to our table after I just expressed we had life-threatening nut allergies. How could he put our things on the same tray?
My husband looked concerned as well. Our eyes met and he asked me, “What do you want to do?”
I told him I needed to process for a minute. As I sat and thought about it, I realized that I now felt totally uncomfortable being served in this restaurant.
I felt like the server did not care and would not pay attention to this issue. Now I felt concerned about what was going on in the kitchen. And I realized, the answer was a clear no go.
We have a family rule that if we are uncomfortable for any reason, we do not eat.
We don’t make excuses or try to minimize our feelings, we just trust our gut.
And I felt uncomfortable. I told this to my husband and he agreed. So we picked up our kids and left.
We did speak with the manager because it is important for staff to know so people can learn. The manger was really upset. We learned that this actually was a huge violation. They have separate sections for allergy orders in the kitchen. What this means was that our tray should NEVER be combined with orders from the non-allergy kitchen. The manager expressed that this was likely a training error with the server and that he was trying to save time by combining our order with another table.
Our instincts were correct. This was not right.
It was unsettling for sure. And I actually called Katie to
ugly cry about how no one cares speak calmly about what I had just experienced. But the truth is there are people (especially at Disney) who really do care about this issue and are trained in it.
We went to a quick service to try and find some dinner and I requested to speak with someone. The man that came out was phenomenal. He could tell I was shaken from before and was very thorough about our order. He explained their kitchen allergy protocols, personally reviewed every ingredient, and I felt safe.
We all enjoyed our dinner and to be honest, we ate very well the rest of the vacation with really caring staff and chefs. I’m not telling you this because I am being critical of Disney. Disney is actually one of the few places I can feel comfortable having someone else prepare food for my kids.
What I hope you hear in this story is that sometimes, even in the best of places, something isn’t right. If your radar is going off, trust it. I deeply want my kids to know this and seeing me trust my instincts helps to model this for them.
You Got This
I know how overwhelming it can feel to raise littles with food allergies. We want so desperately to keep them safe and the level of vigilance that we obtain as their moms is significant. I hope these rules simplify things at least a little.
Remember too that these food allergies do not define your child and that a full, healthy life is more than possible. You can do this <3
Here in your corner, cheering you on.
What To Read Next: How To Talk To Kids About Food Allergies