Interview with a Food Allergy Mom

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Food allergy mom

two epinephrine auto injectors on a blue background with words that say " inside the mind of a food allergy mom "

To recognize Food Allergy Awareness Month we sat down with one of our writers, Jess Johnson, a Food Allergy Mom of four who has been raising kids with severe food allergies for the past 11 years.

Hi Jess! Thanks for chatting with us!
T
hank you! An opportunity for conversation not centered around Minecraft is always welcome!

So how many kids do you have?
I have four kids, ages 11, 9, 8, and 5. All except my youngest has food allergies.

Do you have food allergies of your own too?  How many allergies do you manage all together?
Yes, I have a lot of food allergies as well. How many? I haven’t counted, so this may be fun. We manage milk, egg, peanuts, tree nuts, fish, shellfish, pitted fruit (those are all anaphylactic allergies), and then my serious allergies are milk, oats, wheat, rice, coconut, avocado, banana, carrot, broccoli, lettuce, mustard, orange. I feel like I’m missing some for myself so we can round up to 20. 

Wow. How does that affect the day-to-day life of your family?
My son’s first reaction was ten years ago and since then, our whole world turned upside down. We do not have any of the kid’s allergens in the house at all. It was easier for me to manage that way. We homeschool our kids for multiple reasons, but one reason is it would be difficult to trust the school to accommodate so many life-threatening allergies. We have a saying in our house, “if you can’t read it, you can’t eat it!” Meaning we don’t generally eat foods made by outside people, or any processed foods without reading the label first. For any trip or outing, we have to plan ahead and bring food. I cook a lot. Mostly boring food, but it’s safe! 

What could happen if one of your kids ingests something they’re allergic to?
My kids carry epi-pens for their allergies because reactions have been anaphylactic. When people hear the word anaphylaxis, usually they think of a peanut allergy, and the person’s throat swelling to the point of not breathing.  That can and does happen, but symptoms of anaphylaxis can also include a sharp drop in blood pressure, severe gastro-intestine symptoms, hives, swelling, fainting, trouble breathing. The body is basically shutting down systematically. My oldest son has had several instances where we have had to administer his epi-pen, and a couple (in the beginning) where I should have done it but was scared to.

Wow, that is scary. How has that affected you as a mom?
Honestly, I was diagnosed with General Anxiety Disorder after a few years of managing this and I don’t think that’s a coincidence. It is absolutely terrifying to see your child’s body shutting down right in front of you. There is no other way to put it. Every time we go somewhere, I instinctually scan the entire premises for food. At the sight of deviled eggs, my radar turns red and flashes a skull and crossbones as a siren sounds. DANGER! DANGER! 
Even though I struggle with anxiety, experiencing this has also strengthened my faith because I am constantly reminded that I cannot expect myself to do everything perfectly. I have to trust that God loves us and is helping us through this. 

So do you make everything from scratch? Are you ever able to eat out at restaurants or order in?
I do make a lot of things, but we also have a certain brand of bread we trust, certain brands of oatmeal and cereal. So we do have some grab-and-go options, but I still feel like I’m always in the kitchen. Chipotle is our only go-to for “fast food.” Everyone in my family can safely eat from Chipotle!  We never dine in a restaurant. Because my kids are so sensitive to cross-contamination, it would be hard to find a safe place.

Often when we are trying to help somebody out (new baby, new home, tough times) we bring meals to people. Can you share any alternatives for people when bringing food is not always safe?
Yes, I didn’t realize how much of our culture revolves around food until having to be so careful about it. There are lots of ways you can help. If you really want to contribute food, gift cards are always a good option or offering to go to the store with a list. If they have a restaurant you know they trust, a gift card to that place is a great idea. When I was pregnant, a good friend of mine came over and we made freezer meals. That was a great idea! You can also offer your help cleaning or babysitting.

What do you wish people understood about food allergies?
SO much. First, that it’s not just peanuts. You can be very allergic to ANY food.
I wish people understood that allergies and intolerances are very different things. Celiac disease and a wheat allergy are two very different things. I wish people would understand that cross-contamination (food not containing an allergen prepared with equipment used to prepare food containing the allergen) is a very real risk that can also cause anaphylactic reactions. We have had at least 2 instances of this, and both required an epi-pen. The FDA does not require manufacturers to disclose any information regarding cross-contamination risk, which is extremely frustrating. So if you offer someone with an allergy a food with a label that looks good, they still may refuse it because they know that the company does not disclose cross-contamination risks.

Are there any simple steps the rest of us can take to make families like yours a little bit safer?
Playgrounds. When your child is eating a snack at the playground, please try to sit them down in one spot to eat it, and wipe their cute little hands and face before letting them go back on the equipment. I also always appreciate it when friends would double-check to make sure it was ok to eat that particular snack or even ask ahead of time. Also, anytime you’re in charge of watching any kids for any reason, just getting in the habit of asking if there are any allergies to be aware of, is helpful. 

Do you have anything you’d like to share with moms who are beginning the challenging journey of raising a child with food allergies?
Ok, this may be hard to hear but food allergy moms are desperate, and this makes us prime targets for unregulated “cures” that promise something they can not deliver. Please stay away from these. Your friend’s sister’s cousin does not have the cure for food allergies in the bottom of her purse, even though we so want to believe it!

It is imperative that you are seeing a board-certified allergist. (Talk to your pediatrician about getting an epi-pen while you wait for the allergist appointment.) If you have an epi-pen, always carry 2 with you. (Sometimes the first one fails or gets jammed.) Educate your child. Emotionally support them when they feel left out. If your child is in school, look into getting a 504 plan (your allergist will have more information on this.) Foodallergy.org is also a fantastic resource. It sounds so cliche, but it does get easier! You will figure out how to navigate this in the best way for your family.