Susan (Heim) Kelly, BSN, RN, MPH-candidate
Food Allergies: A Family Affair
There is more than one way to look at and solve food allergy challenges. In this from-the-heart article, Susan Kelly, BSN, RN, MPH-candidate, shares how food allergies have influenced her family life and discusses the importance of embracing 'flex'. You are not in this alone...
Our family has had its share of dietary challenges over the years that have impacted our family in subtle yet important ways.
Forgoing Pantry Favorites
After receiving our daughter’s food allergy diagnosis, we didn’t feel comfortable having her allergens in our home. We came home from the allergist appointment and made a clean sweep of the pantry. Peanut. Tree Nuts. Sesame. Gone. That was a hard day.
We wanted home to be a sanctuary — a safe space where everyone could let their guard down. So, if that meant our food allergic daughter’s older sister (who was then 3) could no longer have her big jar of peanuts to snack on, then so be it. But try explaining that to a 3-year-old. Our oldest daughter definitely felt the loss.
Even today, years into managing our daughter’s food allergies, it takes us a lot longer to shop for groceries than it did pre-diagnosis. We have to read every ingredient label before adding food to our cart. Even if we’ve bought the item before, we still need to read the label every time because manufacturers change up ingredients and manufacturing processes all the time.
Angst Over Introducing New Foods to Our Babies
As a brand-new parent, you don’t know what you don’t know. By the time siblings arrive, you’ve traveled some serious parenting miles and are veterans. You’ve got the drill down. Right? Maybe not entirely…
When your firstborn children have food allergies, you stress over introducing new foods to the newest family additions.
For example, when we had our 3rd daughter, given our experience with her older sister, we were nervous about feeding her any allergenic foods. There was no LEAP study (yet) to guide us. We waited to feed our third child tree nuts and peanuts, hoping for the best. We were lucky. We are thankful for the scientific advances of the LEAP study, and hope all parents learn about these important findings to help prevent their children from developing food allergies.
Learning the Give and Take of Compromise
Over the years, our daughter with food allergies has wondered, “What’s it like to go to a restaurant or ice cream shop and order whatever you want?” as she’s watched her siblings order their food and ice cream with abandon.
We’ve had to work on compromise as a family. We’ve worked hard to find the middle ground so everyone feels heard and feels like their desires are met to a certain degree.
As the kids got older, we allowed our youngest daughter to buy a Reese’s Peanut Butter Cup and eat it, though we put rules in place (like eating it outside, like washing hands and brushing teeth after finishing.) We needed to find a balance.
We allowed our kids without food allergies to eat whatever they want at a friend’s house or on a playdate. Or, we’d make two stops for ice cream — the shop with the nuts & sprinkles that are not safe for our daughter with food allergies, then the trusted shop that serves safe ice cream. This is important to all of us.
Compromise isn’t always easy.
Choosing a restaurant is never an ‘in the moment’ decision for our family. There are real risks when we eat out.
When you manage food allergies, you look at restaurant menus differently. It’s not “hmmmmm…what do I want to eat tonight?” It’s more like “hmmmm…is there anything on this menu I can safely eat?” Though subtle, it is definitely a psychological hill to climb for our daughter.
The trust-based relationships we’ve developed over time with our go-to restaurants allow us to relax our guard a bit and enjoy a meal out together. We feel that these restaurants understand food allergies and our daughter has safe options to eat. But honestly? I do sometimes resent not being able to explore a new restaurant on a whim because I’m uncertain about their food allergy awareness, training, and ability to safely meet our needs. So does my daughter with food allergies.
Our search for the middle ground has definitely been a positive for us overall because life is all about compromises. But sometimes, it is so much work!
Avoiding ‘Stuck’ — Embracing ‘Flex’...mindfully
As our daughter with food allergies got older, she started to think more about her food allergies. We had a lot of discussions as a family. She reflected at the time, “Other people don’t live the way I have to live. How do I keep myself safe when I’m around others?”
As a family, we’ve realized that food allergies are something you need to evolve with. You don’t want to be stuck in a pattern. You’re not always in control. Your children need to be equipped with judgement and flexibility to deal with the surprises life throws at them.
The rules you put in place when first diagnosed with food allergies may not be the rules you stick with as your children get older.
Grappling with Setbacks…Together
For a child, food allergies can be isolating. After a reaction, there’s a lot to process and it can take a long time to process everything. The path forward can be paved with panic attacks, eating issues, mystifying behavioral changes. Food allergies can nibble away at your child’s confidence, hampering their growth and willingness to explore for fear of having another reaction or of being judged.
As a parent you question yourself. A lot. You ask yourself if you did or did not do something to contribute to this fear. You get frustrated. You get angry at this diagnosis. These are all hard, honest, valid feelings.
Seeking mental health support from a mental health professional who understood the nuances of food allergy was an important step for us. It allowed us to support our daughter’s mental and emotional wellbeing and our wellbeing as a family. It was powerful.
Biofeedback therapy, for example, helped our daughter learn how to calm herself and recognize and extinguish anxious feelings. It showed her that her thoughts were not her boss and she could let them go. Physical exercise also became a great outlet for her. It put her on the path to win a national karate championship for her division in 2019, and to earn her black belt.
How do you pull through challenges?
Here’s what we tried to do to help our daughter with food allergies, and to help our entire family. My hope is that our family’s journey can help your family navigate food allergic living more confidently, together:
1. Listen to your child’s needs and concerns with empathy. Also listen to your other children’s needs with empathy because food allergies don’t just impact the individual with the condition. They affect everyone in your family.
2. Become skilled in the art of compromise. I do believe where there’s a will, there’s a way. I believe you can find a middle ground so that even if everyone in the family’s needs can’t be fully met, perhaps they can be partially achieved. The ability to communicate openly, honestly and respectfully, along with a willingness to bend are important success factors here.
3. Don’t be hesitant to seek out mental health help. For some, this may not be a comfortable step to take, but for our family it was life altering in a good way. If you have reservations, at least set aside time to explore the option so you can make an informed decision about whether it’s a fit for your family. Or not. Your allergist is a good place to start and can likely refer you to an allergy-informed clinical therapist. The Food Allergy Counselor Directory lists allergy-informed clinical therapists in 35+ states, including Canada (in the Toronto and Vancouver areas), and Australia.
4. Focus on and develop your child’s strengths. Do they enjoy cooking? Do they enjoy sports, music, art, yoga, dance, the outdoors? Find what excites them and build on that for joy and confidence. Getting our daughter involved in karate was the one of the best steps we ever took to help her build confidence as she’s mastered a tough and demanding sport. Exercise is a release for her that takes her mind off food allergies, and helps her get to a positive and healthy state of mind.
5. Nurture a flexible mindset. There is more than one way to look at and solve problems. Stay agile. Avoid ‘stuck’.
6. Find support from friends and communities who understand. The FAACT-recognized FRIENDS HELPING FRIENDS food allergy support group that I co-lead may be a source of support and information for you. You’re not in this alone.
Susan (Heim) Kelly is an allergy & immunology nurse, author and mother of four children (one with life threatening food allergies, another with Eosinophilic Esophagitis (EoE).) Sue advocates tirelessly for the food allergic population. Her advocacy work includes public speaking, writing and driving policy changes related to food allergy management and anaphylaxis preparedness in schools and restaurants. She co-leads the FAACT-recognized FRIENDS HELPING FRIENDS food allergy support group and has served as VP of Education for FAACT. Sue is currently working on a Master’s in Public Health (MPH) at Hofstra University. Follow her blog at www.momnursefoodallergies.wordpress.com.