Guest Post by: Jenny Andjelkovic, FARE National Ambassador & Food Allergy CT Co-chair
Two of my three children are deathly allergic to tree nuts. As if parenting doesn’t have enough stressors, the stress of managing family life with food allergies 24:7 considerably adds to the load.
“Life happens. Sometimes you make mistakes.”
As food allergy parents we cope with uncertainty every time we kiss our children goodbye and send them to day care, to school, on a play date. Will they make it through their day without exposure to an allergen? Without an allergic reaction? Without a trip to the ER? Or, worse? Exposure can happen any time, anywhere, even if you or your child’s caregivers are on high alert 24:7, or not. They can happen on the bus, during craft time, during snack, at lunch, during recess, on a play date, at a grocery store, when dining out, at a holiday dinner or a birthday celebration.
Life happens. Sometimes you make mistakes…
I’d just come home from the hospital with our newborn and my oldest daughter wanted to sample a cookie from a gift basket. I carefully read the label and deemed it ‘good to go’.
It wasn’t...
I missed that two ingredients labels were stuck together on the package, an incorrect one hiding the real one with walnuts. When my daughter threw up violently after a bite, I ‘saw’ a stomach bug. The telltale itching and hives of her ‘normal’ allergic reaction were MIA. My daughter begged me not leave her alone when I bathed her and tucked her in bed, but I brushed it aside.
Thankfully, my sister questioned me, kicking me into allergy mom overdrive.
After revisiting the label and making a panic call to the allergist, I raced back to my daughter, epi injector in hand. She was blue, barely breathing. As soon as I injected her tiny thigh, her breathing stabilized. Shaking, I called 911. In the ambulance the familiar hives finally appeared and her breathing faltered a second time. She needed a second dose of epinephrine.
I almost lost my daughter because I discounted observations of my daughter’s physical and mental state based on wrong information and the absence of familiar symptoms. I learned important lessons from this near tragedy that will stay with me forever.
“Allergic reactions can present differently.”
Allergic reactions can present differently with each reaction — with a different set of symptoms, mild to severe, and a variable timeline. Expect the unexpected. It’s up to you as an allergy parent to know the signs, follow your Emergency Care Plan, avoid second guessing and act quickly.
I saw that my family needed a set of hard and fast rules for managing our allergies. I know that, as parents, my husband and I are powerful role models. Every choice we make sets an example.
What if?
We forgot their medication and still allowed them to eat, or
We waffled or delayed treatment at any time, ever, or
We questioned their symptoms when they thought they were having a reaction.
They might do the same on their own, when they’re away from us, following our example. That is a risk we decided we would NOT accept as a family.
“What do you want your children to do when not with you? Be the example.”
Together, we made some operating rules we stick to. With these rules in place, ‘in the moment’ of a food misstep, we know exactly what to do. We are more confident managing our lives because we know what to do when the unexpected happens. Having food allergy rules we all agree to and follow reduces our family’s food allergy anxiety.
Sharing our ‘Family Rules’ here:
Never go anywhere without your epinephrine! Now that my kids are teenagers, they carry their own. While I keep back-ups in the car and my purse, we operate as though those backups don’t exist and each of them must have their own medication.
If you forget your medication - Do NOT eat anything!
Renew all medication at every annual physical. We track expiration dates and try to re-stock all the epinephrine at the same time so it’s all on the same expiration cycle.
Read every food label three times: When we buy — When we get home, before we put it away — When we are about to open and eat it.
Communicate, communicate, communicate: At restaurants, or at other homes, notify the server/friend when you order/arrive and again before eating.
Always tell friends where you keep your medication.
If you eat something and then feel any symptom that feels food allergy-ish (itchy, hives, stomachache), dial 911 and inject epinephrine immediately. No Benadryl. No waffling. No questions asked. You know your body!
Your ‘Family Rules’ will depend on the type of allergies you manage and the past reactions your children have had. They may be very different from our rules. Regardless, make rules that are right for you. Live by them.
“Family Rules help you take control, manage your fear, reduce your anxiety, and prepare your kids for the future.”
About the Author: Jenny (Wooton) Andjelkovic devotes her time to many causes close to her heart, but few as personal as her work in the food allergy space. All her children have severe food allergies. She currently serves on the FARE (Food Allergy Research and Education) Board of National Ambassadors. Jenny also Co-Chairs Food Allergy CT, a FARE-recognized support group that educates and connects Fairfield County food allergy families.
Photo Credit: Thank you to Jenny Andjelkovic for providing the post image.