When Laurie Syphard’s oldest child was 18 months old, her lip swelled up after eating a veggie burger. “It looked like someone had punched her in the mouth,” says Syphard. Food allergy tests showed her daughter was allergic to tree nuts. Then a few years later, Syphard’s second child got her own allergy diagnosis at an even younger age: 9 months.
“We changed her diaper after making our oldest a peanut butter sandwich, and there was some residue on our hands,” says Syphard. Her baby broke out in hives. The allergist confirmed a significant peanut allergy.
Syphard says finding out both her daughters had severe food allergies was overwhelming. “It felt like I did something wrong,” she says.
Kelly Cleary, MD, an emergency room pediatrician and senior director of education and support programs at Food Allergy Research & Education (FARE), is an allergy mom herself. She agrees that learning your child is allergic to certain foods is an “anxiety-provoking diagnosis.”
A study by the Asthma and Allergy Foundation of America found that 75% of the parents they surveyed felt fear and anxiety because of their child’s food allergies.
“When my son was first diagnosed, he had over 25 food allergies. It was really daunting to carry that knowledge,” says Cleary. “It’s one of those hidden illnesses where we as parents know what’s going on, but it’s not always apparent to everybody else, and on top of that, it’s life-threatening.”
It’s tempting to want to keep your baby in a bubble, so you never have to worry about potential exposure, but that’s just not feasible.
“At some point you realize that the bubble has to be popped,” says Cleary.
With knowledge, tools, and support, it’s possible not just to survive, but thrive while caring for a baby with allergies. Here’s how.
Anxiety Buster #1: Information
As you seek out knowledge about food allergies in general and, more specifically, your child’s food allergies, be sure you’re relying on sound sources. Find a pediatric allergist you trust and have a good relationship with, and ask as many questions as you need to so that you feel confident in your knowledge.
“After a food allergy diagnosis, you’re often told what to avoid, but then as a parent, you need to kind of understand what the next level of that means,” says Cleary. “Knowledge is key, and talking to your physician, your pediatrician, and allergist will be key in giving you some of that data.”
She recommends using your health care team to get a solid handle on:
- How to read labels
- Signs and symptoms to look out for in your child
- What scenarios may pose risk for your baby
Credible, trustworthy online sources can help, too. Ask your pediatrician for recommendations.
Anxiety Buster #2: Planning
Your pediatrician will help you come up with a food allergy action plan. (You can download FARE’s version at www.foodallergy.org/living-food-allergies/food-allergy-essentials/food-allergy-anaphylaxis-emergency-care-plan.) This is a document that lays out step-by-step instructions for what to do if your child has an allergic reaction, is signed by a doctor, and includes emergency contact information. Chef cards that explain your baby’s allergens are also helpful to have on hand at restaurants. You can find examples online.
If your baby has an anaphylaxis response to a food and has an EpiPen, teach anyone who will be caring for them how to use it. Cleary recommends printing off instructions not only in words, but in pictures, and then encouraging caregivers to practice with the pen.
“I save expired autoinjectors for this reason,” she says. “And then when anyone new comes into my son’s life, like a babysitter or a coach, I bring an orange and I have them practice on the orange.”
Syphard says being aware of potential exposure wherever she’s headed with her kids helps her feel more confident about their well-being out in the world. This includes schools, playdates, restaurants, and all travel – especially airplanes.
“Bring sanitizing wipes to wipe things down like tables, food trays, even seats,” she says. “Bring extra food from home that you know your kids can eat so you aren’t stuck without options.”
Anxiety Buster #3: Communication
It may take practice, but learning how to speak up and let others know about your child’s allergies is an important advocacy tool for both you and your child.
“For me, that meant always being really honest with people, whether it was restaurants, playdates, or other parents,” says Cleary.
Have a few memorized phrases on hand so you can stay calm and consistent with your message to people as you’re out and about with your baby. Even at a young age, children can pick up on emotions, so the better practiced you are, the more confidently you can relay potentially life-saving information about your baby to others.
Anxiety Buster #4: Support
Find a mental health professional to help you navigate the feelings you’re having. If possible, look for a therapist or counselor who has experience with food allergies, either personally or professionally.
“As a mental health professional, what a therapist really needs to understand is like the day in the life of a food allergy family,” says Cleary. “It’s important to know the nuances of all of the checking that we have to do, the worry, the worry for the child, the exclusion, and the bullying.”
Anxiety Buster #5: Community
Support groups, online forums, and other resources can give you a place to feel understood and seen by other people who “get it.” For Syphard, social media connection with other allergy parents has proved to be a lifeline.
“I found the ‘No Nuts Moms Group’ on Facebook when I first realized I was an allergy parent,” she says. “People list ‘safe’ food items, depending on certain allergies, and ask questions about others. The forum is extremely helpful and detailed.”
Through another local Facebook group, she was able to meet other parents in person, which she says made her feel supported, less alone, and confident that she would be OK.
“It may seem very daunting at first, but you’ll be able to manage it all and then some,” she says. “It’s just another layer of your parenting power that you didn’t realize you needed to have. Rely on other, more experienced allergy parents to help you navigate this new space. You can do it!”
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Photo Credit: gpointstudio / Getty Images
Kelly Cleary, MD, emergency room pediatrician; senior director of education and support programs, Food Allergy Research & Education (FARE).
Laurie Syphard, Baltimore.
Kids With Food Allergies: “My Life With Food Allergy.”
Massachusetts General Hospital: “Managing Anxiety: A Handout for Families of Children with Food Allergies.”