"Food allergies." What?! I knew that allergies ran in my family, because I grew up with them, but allergic to food? And not just one food group, but four major food groups, and others too?
A feeling of helplessness and fear came over me when my son Daniel, my third child, was diagnosed with life-threatening food allergies at the age of ten months old. The realization that my child could die from eating food was a shock, despite knowing another child with food allergies from the on-site medical day care where I worked as a pediatric occupational therapist and director. Thus began the eye-opening journey of education (mine and others'), label reading, revised cooking, and fear for every new situation that occurred.
Back in 1997, there were not a lot of resources for children with food allergies, especially for children with more than one major allergy. Daniel was allergic to milk, eggs, peanuts, tree nuts, peas, lentils, and later we added sesame and mustard to the list. He had anaphylactic reactions - he could die. We knew that we couldn't go anywhere without his life saving medicine (epinephrine), Benadryl, and his inhaler. I found a website that had support for parents like me, but at that time it was the only one. Now there are many, and with the development of social media, and the increase in food allergies, you can find so many resources and support. The Food Allergy Network, as it was called back then, was growing. It has since developed into Food Allergy Research and Education (FARE). It was a lifesaver for me.
Since I was a working mom, I needed to put Daniel in childcare. Luckily, in his first three years, he was able to attend the on-site medical daycare where I worked due to his food allergies. Nurses were there, and I knew that his needs were being met. But, then he transitioned to a preschool program where there had never been a child with needs like his before. Education was extremely important, though. So, every year, I would review his allergy plan with the staff: what his reactions could look like, and what actions they needed to take. If someone touched him with peanuts, milk, or eggs on their hands, he could develop a reaction.
Looking back, preschool was easy - he was in small classes. Then came kindergarten in the public schools. More education, and more fear, each and every year. But Daniel was smart. He knew from the time he could talk that he had food allergies. He would make sure other children wouldn’t touch his food, his toys, or him, if they had eaten something.
As Daniel got older, handling his allergies did get a bit easier. Or, it just became part of our lives. Regardless, it changed our lives. We could no longer just leave the house without making sure we had his life saving medicine. We needed to plan ahead if we were not going to be home for a meal or a snack. If we were gone for the day, we had to pack his food because he couldn’t just eat out anywhere. In fact, a McDonald’s hamburger and French fries were the only foods that he ate out for many years. Yes, we would go to restaurants with the other two children, but Daniel would bring his food. In fact, even now, at age sixteen, there are just a handful of restaurants that he has eaten out in. And when he does, he continues to be cautious, and sometimes even fearful.
As for vacations, they have to be planned so that we can store and prepare Daniel’s food. I wonder how I ever took the three kids to the Bahamas when they were eight, eleven and fourteen. I even made a meatloaf, froze it, and packed it in my checked luggage so that he would have dinner for six nights. Of course, I also made sure I packed home made-cookies, pancakes, and packaged safe chips and pretzels so he could eat while away.
Now as a teenager, there are new obstacles. Recently Daniel flew to Texas for a convention with over 2,000 teens for five days. While I reminded him to check the seats before he put on the seat covers I bought for him, and made sure he had enough extra medication and food packed for the five days (and possibly more if there was a delay), it was then time to let him go - on his own - knowing that I did all that I could on my end to assure his safety. After all, in less than two years he will be heading to college with thousands of other children who aren't aware that just one bite could kill him. This is the reality of living with food allergies.
Go-to resources for food allergies:
- FARE website and Facebook page
- Ener-G egg replacer (for recipes with less than two eggs)
- Utlizing the 504 plan at school
Advice for fellow parents:
It's important to have a written emergency plan, and to meet with school staff prior to the first day of school. Many children with food allergies have 504 plans to assure safety and modifications in the school setting, but even with a 504 plan, communication with the teachers, aids, nurse, and transportation is important (especially when your child is in elementary and middle school). Bullying can be an issue no matter how much bullying-prevention education is used, and needs to be reported immediately to the teacher, guidance and principal.
For more information on food allergies in school, take a look at our comprehensive resource.
About the author
Randy Berman Reisfeld is a mom of three children (ages 22, 19, and 16), the youngest of whom has life threatening allergies to milk, egg, peanuts, tree nuts, peas, mustard, sesame, and lentils. Randy has also worked as an Occupational Therapist for the past 32 years, specializing in infants, toddlers, and NICU.