Raising Kids With Life-Threatening Food Allergies
Having kids with life-threatening allergies isn't easy, but one mother is raising awareness on the topic.
Paris Jalali runs a tight ship, and not necessarily by choice. With four boys ages seven and under — two of whom have multiple food allergies — a slip-up can be life-threatening.
From color-coded cups so that drinks are not confused, to assigned seating at the dinner table to avoid cross-contamination, to a safe-for-all rotating dinner menu, she has to be on her toes.
The Big 8
Between them, her two boys are allergic to all but one of “The Big 8,” or the eight major allergenic food categories — milk, eggs, peanuts, tree nuts, fish, crustacean shellfish, wheat and soy — as well as corn and latex.
And just as you might expect, the eight food sources appear in a large number of ingredient lists.
Nothing’s Off Limits
Jalali has a very limited rotating mealtime schedule, making it not only challenging, but also stressful to feed her family. Yet, she doesn’t restrict any kind of food in the house.
“It would be easy to eliminate allergens if it were one or two,” she says. “However, since my sons have so many [allergies], it would not be realistic to cut off all the others from nutritious foods. Also, it would create a false sense of security, and I want my two sons to be aware that not everywhere is safe, and they need to ask and never assume.”
Creating Strict Rules
While not restricting which foods come into the house, Jalali implements very strict rules in order to ensure everyone stays safe.
For instance, the allergic boys are served first at mealtimes, to avoid any mistakes. One parent must sit at a separate table with any child eating a food that others are allergic to, and no one is allowed to leave the table mid-meal or touch anything.
Understanding the Severity of Allergies
Jalali, who is also a nurse, says that food allergies and intolerances are commonly misunderstood. She says a major source of frustration is that people believe that only peanut allergies can be life-threatening, and so they disregard other severe food allergies.
“People assume that only peanuts can kill,” Jalali says. “However, many people have allergies to other foods that can lead to anaphylaxis — e.g., dairy, sesame, fish, shellfish, tomato, wheat, soy, latex and cinnamon. So, it's not a fad; it's not a choice. It's an actual food allergy, and it can be fatal.
“My oldest [son] has a dairy [allergy], he's actually anaphylactic to dairy, and there's a misconception out there. People think, oh, it's an intolerance. No, it's not an intolerance. It's not just going to give him a stomachache. It can actually kill him.”
Debunking Misconceptions
Dr. Chitra Dinakar is a clinical professor and clinical chief of allergy, asthma and immunodeficiency at Stanford University School of Medicine, and an allergist and pediatrician by training. While she agrees that all food allergies should be taken seriously by all, she believes that the prevalence of peanut products might be a reason for the misconception.
“Peanut butter or peanut products are so widely used. There is also this element of cross-reactivity that makes the problem bigger,” Dr. Dinakar says. “For instance, a peanut-allergic person is more likely to be also tree-nut allergic. A person allergic to cashew may also develop cross-reactivity to pistachio. Lastly, there is a large number of peanut/nut allergic patients who have had life-threatening allergic reactions," compared with a smaller number of patients reacting to other allergens.
An Increase in Food Allergies
According to the Center for Disease Control and Prevention, food allergies among children 17 or younger increased by approximately 50 percent between 1997 and 2011. Dr. Dinakar says that she has seen a significant increase in the number of children with food allergies as well as other conditions.
“I personally started seeing an uptick in food allergies about a decade ago. Since then, I have seen a sharply increasing number of individuals with one or more food allergies significantly affecting their lives,” Dr. Dinaker says.
“Not only that, many of them have allergic conditions in addition to food allergies, such as eczema, asthma and allergic rhinitis, that sometimes hit them all at the same time (or sequentially), making it so much more challenging for them to handle,” she adds. “It made me determined to do all that I could to help these individuals get better.”
A Double-Edged Sword
With the increase in vaccine rates and living in a more sterile environment, remarkable progress has been made in combating infectious diseases.
However, our heightened attention to hygiene could be a double-edged sword. The hygiene hypothesis, which Dr. Dinakar cites, essentially states that the more processed and less natural our food is and the more clean our environment is, the more we are disrupting nature’s delicate balance and changing our microbiomes.
“We are constantly wiping every table down and trying to be as ‘germ free’ as possible. It's exposure in a normal circumstance to harmless environmental bugs that we are not experiencing,” Dinakar says.
Expecting the Unexpected
For those who have a loved one with a food allergy, the fear is very real. Food allergies can strike unexpectedly, and it can seem as if danger is always lurking.
Speaking about her sons, Jalali wonders, “Are they ever going to have a normal life? Can they go [out], and can I be confident that there's going to be nothing happening? No, because there have been incidents that happened in my own house.”
A Triple-Check System
Keeping society aware and alert to the dangers of all food allergies is vital. Jalali says that food companies can do a lot more when it comes to properly labeling ingredients.
The Food Allergen Labeling and Consumer Protection Act (FALCPA) requires that food manufacturers disclose the top eight food allergens on food labels, but Jalali still has a triple-check system in place.
She’ll check the label at the store, an additional time at home, and again before making the meal. She has also learned the hard way that food ingredients on products can change from one country to another. Undeclared ingredients on food labels are one of the top reasons for food recalls. Jalali says that online parent groups, which can be found on Food Allergy and Research Education’s (FARE) website, help to spread the word if a food is mislabeled or poses a threat to someone with a food allergy.
Staying Inclusive
In an effort to try to avoid her children feeling left out, Jalali will sometimes ask what food is being served at an event, and bring something similar that is safe for her children who have allergies.
She also says that caregivers should not exclude or isolate children with allergies in an effort to protect them. When it comes to the school environment, it’s vital for educational institutions to make sure that activities revolving around food such as class parties or bake sales are inclusive of all.
As They Grow Older
As children become older and more independent, parents like Jalali have an increasing sense of loss of control. But FARE recommends at least one way to combat this fear. The Protect A Life (PAL) program aims to help children learn the essential skills necessary to save a friend’s life in the case of a reaction to a food. And Dr. Dinakar says she encourages parents to make sure their children have a core safety net.
“These are friends who know about your child’s food allergies, who can be taught how to give injectable epinephrine, and who are willing to look out for your child and help catch the signs of anaphylaxis early and help treat it,” she says. “These are friends your child trusts because they will keep your child’s secret and help your child fit into the peer group.”
Turning It Into a Book
Jalali wrote a book, "Super Dan," about her experiences raising kids with allergies.
Considering the hurdles that she and her family have endured, and how widely misunderstood all food allergies can be, Jalali decided to write a children’s book. The idea also stemmed from the lack of children’s books available that cover a variety of food allergies.
“The name of my book is ‘SuperDan.’ I came up with the idea when I was explaining my son Daniel’s food allergies to someone, and they said he is weak,” she says. “I corrected them by telling them his immune system was so strong that it overreacts to his allergens (his kryptonite).”
Jalali hopes that the book will help raise awareness for food-allergic kids and keep them safe. The book’s estimated release date is October 2018.