How to get through to close relatives that food allergies are a life-threatening condition – when they assume you’re just too protective.
ONE spring evening in Houston, Texas, Donya Mosaffa was helping her two young daughters through their bedtime routine of putting on pyjamas and brushing their teeth. Mosaffa’s dad, a doting grandfather, planted kisses all over the face of Charlize, the younger child, who is allergic to peanuts, pistachios and cashews.
Within a minute, hives popped up everywhere the kisses had landed on the 2-year-old. “Did you have nuts today?” Mosaffa asked her dad. He had, since nuts are a staple of the Middle Eastern diet. But, that was hours ago, said her dad. It seems the protein-containing oils had remained on his moustache.
“He had this frightened look that I hadn’t seen before,” says Mosaffa, a nurse practitioner. “He could finally see that his actions had a role in her having this reaction.” Until that night, Mosaffa had struggled to have her relatives understand how to keep her toddler safe, since Charlize was the first person in the family to have a food allergy. No matter how many ways she tried to explain the dangers, or how many bowls of nuts she slid out of reach, her father in particular seemed to think his daughter was exaggerating.
Those nutty kisses proved the turning point – Mosaffa’s father now knew just how sensitive to allergens Charlize was. He immediately changed his ways, and gained a newfound interest in allergy precautions and what to do in an emergency.
With food allergies, a steep learning curve with relatives turns out to be a common issue. When Allergic Living asked readers about their experiences with extended family, many spoke of frustrating times trying to impart the care and caution needed to avoid accidental allergen exposures. Like Mosaffa, some have seen the light bulb come on through experience or persistence.
Why Don’t They Get It?
Yet for others who contacted us, the job of teaching the food rules to close relatives – like grandparents, parental siblings and cousins – is a continuing challenge. These allergy families are providing information about their children’s or their own life-threatening allergy needs. So why don’t their families just get it?
The answers may not be uniform, but largely relate to communication issues. Jennifer Bute, PhD, says whether a restaurant server or your child’s grandparent, precautions taken depend on how messaging is given about food allergy needs – and how receptive the listener is to what’s relayed. As both an associate professor in the communications studies department at Indiana University-Purdue University Indianapolis (IUPUI) and a food allergy mom, Bute was intrigued to research how parents explain their children’s food allergies to others.
She launched a small study in 2018, interviewing 26 parents about their family’s food allergy story, and asked about the biggest challenges to getting messages across, and which conversations stood out in the participants’ minds. Although she didn’t prompt anyone to speak about relatives, 22 of the parents related difficult conversations they’d had with family.
In this study, the tension was reported to be highest with grandparents of children with food allergies. They sometimes told their adult children they were being over-cautious, or that it felt like they weren’t trusted to keep their grandchildren safe.
“It’s the people you’re often closest to and would expect to be the most accommodating who were sometimes the most difficult,” Bute says.
Indianapolis mom Dina Palmer would agree. She recalls her exasperation after explaining to her parents the importance of reading food labels, and putting away all nuts before she brought her 5-year-old with allergies and his brothers over for dinner. Yet when her family arrived, nuts were everywhere. “It just kind of went in one ear and out the other.”
From Huffiness to Harmony
The trouble with food allergies is that unless you’re having a reaction, the disease is invisible. Whether a child or an adult, the person usually appears perfectly healthy – except when fed their particular allergen. Then
symptoms might be mild, or they may quickly turn into anaphylaxis, with potentially life-threatening responses such as wheezing, constricting throat, dropping blood pressure, full body hives and nausea. And all from the seemingly innocuous activity of eating.
Those who have never witnessed anaphylaxis can find it difficult to grasp that mere food can be so dangerous, notes Dr. Gia Rosenblum, a clinician psychologist with a practice near Princeton, New Jersey. People are also susceptible to confirmation bias, which makes them more likely to believe information that bolsters their perspective rather than facts that contradict their understanding.
Since this is a stealthy condition, it’s often a challenge to convince others of hypothetical harm, she says. Such denial often surfaces in dismissive responses such as “no one’s ever had a problem with my food before,” or “but I made it myself.” Rosenblum, the parent of a food-allergic teen with a practice focused on families dealing with medical conditions, says that turning down food can also feel like a rejection of a relative’s labor of love in preparing a meal. Some cultures consider this an insult. “Rejecting the food can be seen as rejecting the symbolic meaning of the food,” she says.
The concept that food could threaten a child’s life is an unwelcome truth, and Rosenblum says it can lead some relatives to accuse the parents of being over-protective or too picky. She has seen it be emotionally painful when both parties end up feeling misunderstood and invalidated.
It’s fortunate that many allergic children’s relatives, especially grandparents, are actively involved in their caregiving and are rising to the challenge of scrupulous label reading and avoiding cross-contact in the kitchen. But it’s hard to say whether they’re the majority. Increasingly, research is emerging to suggest that, among the estimated 17.5 million Americans and Canadians with food allergies, there is an issue with family members taking food allergies seriously enough.
A 2017 Canadian study found that one-third of children who had anaphylactic emergencies had been eating under the supervision of an adult, and that two-thirds of these caregivers were not their parents. Most of these adults had ignored the labeling on packaged food linked to the reaction. In 2012, a Mount Sinai School of Medicine study found that among children under 15 months old, 51 percent of allergic reactions were related to caregivers other than a parent feeding a child.
Gina Clowes, a life coach and food allergy consultant in the Pittsburgh area, is an expert at advising how to manage the family dynamic with food allergies, but she confesses to her own communication gap in the early days.
‘Wanted Them To See How Scared I Was’
When her son, who is now in high school, was first diagnosed with multiple food triggers as an infant, Clowes found herself becoming upset when her family members gave their kids sippy cups filled with milk around her dairy-allergic son. Nor did they seem to get it when they invited her family on a cruise, where there would be hazardous food.
“I wanted them to get how scared I was, how overwhelmed I was,” she says. It took her a few years to come to the realization that she needed to do more planning and a better job of communicating her family’s food restrictions in advance.
Today, Clowes also appreciates the perspective from the side of the family that hasn’t absorbed the new allergy information. The requirements of parents of allergic kids may at first sound overwhelming: “Did you read the ingredients on every package? Do you know milk products sometimes have other names? Was all the food kept separate as you prepared different dishes?”
From personal experience and from working with other allergy families, Clowes finds it works best to introduce the information in stages. As they first begin to educate relatives about the new precautions to keep kids with allergies safe, parents should initially dial down expectations and do a lot of the work themselves. This means bringing along safe food to family events, as well as anticipating that well-intentioned relatives will make mistakes, so there’s a need to keep an eye on what snacks are in reach and what’s cooking on the stove.
With repeated exposure to the allergy rules, and good boundaries in place in the meantime, many relatives will come around. But there has to be a will.
It is also helpful to play host more often, where you can control what is served, and check any incoming dishes. A parent can kindly refuse someone’s food offering, no doubt made with good intentions. “The child’s health and safety always has to come first,” notes Clowes. If some family members are resistant to steps to protect a child from allergic reactions, they can visit, but she would not allow them take care of the child alone.
The Harder Cases
In Bute’s study of allergy communication issues, some parents despaired about whether their parents or their in-laws were ever going to grasp how to keep a food-allergic child safe. Bute understood. Her son Jack, who’s now 8, had his first allergic reaction as a 3-year-old at her mother-in-law’s house. He’d found a peanut on the floor – and ate it.
Given that his grandmother saw that first reaction, complete with vomiting and hives, Bute thought she would follow instructions from her and her husband, especially as the boy’s allergies grew to include tree nuts and unbaked eggs. Instead, when the grandparents were caring for Jack, they would give him food without reading the labels, or offer a new food without checking with mom and dad.
With Jack in school, the challenge has shifted to the holidays. Two years ago at Christmas, Bute’s family arrived at grandma’s house to find one of the main courses was a family favorite: sweet potato casserole, with pecans. “It’s what everyone else likes,” her mother-in-law said. Unsure if the rest of the food on the table had been cross-contaminated with the nuts, Bute’s husband was soon rifling through the kitchen for safe foods. It made for one lousy Christmas dinner.
The next year, her husband called his mother in advance to ask that his mother not serve any nuts at Christmas. Her response was somewhat reluctant, but she agreed. “Things have improved dramatically,” says Bute. “But I am interested in how we can use communication more effectively to prevent such uncomfortable situations.”
Among families we heard from for this article, some felt that for the sake of safety, they had no choice but to bow out of long-standing traditions. Julie from California (who asked that her real name not be used) had thoroughly enjoyed Thanksgiving as she was growing up. To this day, her grandmother usually organizes a gathering of 50 family members from across the state for the big day.
But in 2011, Julie* had the second of her two kids. Thanksgiving was about to arrive after 10 grueling months with baby Thomas. The little boy was continuously throwing up breast milk and formula, and introducing solids only prompted an endless array of hives. An allergist then diagnosed him as allergic to milk, soy, apples and more.
Her aunt was preparing to host that year’s dinner and, since Thomas was crawling and could reach low tables, Julie asked if they could eliminate some of his triggers from the food being set out. But the relatives wanted to have the food they enjoy, and said they were sure Julie could keep an eye on her son. The occasion was nerve-racking for her.
“It hurts my heart,” says Julie. “This makes me feel unimportant, or that my family’s not important.” The last straw came three years ago. Her grandmother planned a Thanksgiving reunion at a restaurant that wouldn’t be a safe venue for Thomas, whose list of allergies today includes eggs, peanuts, peas, tree nuts and mango. Julie and her husband chose to take the kids to Disneyland instead, where Thomas had an allergy-friendly dinner at Ariel’s Grotto. She decided if this was reality, it was time to build their own Thanksgiving memories.
Driving Home the Point
With some allergy skeptics, getting tough can bring results.
Frustration had almost led Felicia Kennedy of Fishers, Indiana, to limit her mother-in-law’s visits with her kids when nana was refusing to follow instructions to protect 3-year-old Mason from exposure to peanuts. When Mason’s allergy was confirmed at 13 months of age, Kennedy told all extended family members they must be careful to give Mason only food the parents approved and to learn to use an epinephrine auto-injector if they wanted to take care of Mason.
A few weeks after the diagnosis, Kennedy left Mason at Nana’s house with a bag full of safe food. When she came to collect him, Kennedy found her mother-in-law had given her son foods other than the safe snacks she’d provided. She was shocked. Months passed, and Nana still wouldn’t take direction about what to feed to Mason. It seemed like the grandmother didn’t believe the allergy was real. By the time Mason was about 18 months, his parents lost patience. Kennedy, her husband James and her sister-in-law (whose mother lives with her) together told Nana that she needed to get on board. Otherwise, she’d only see her grandchildren at their house during the holidays.
Kennedy said they had to be blunt to get through: “I couldn’t trust her not to hurt him.” Nana got the message.
Her supportive sister-in-law took the initiative to create a separate section of the pantry dedicated to Mason-safe foods. Today, if Nana sees treats at the grocery store she wants to buy Mason, she first sends a photo of the label to Kennedy for approval. Kennedy also provides and updates a comprehensive list of safe foods, which she has given to all the relatives. Mason’s nana has also learned other ways to dote on her grandkids, such as buying them books instead of candy for special occasions.
These days, Kennedy considers herself fortunate. “My family and James’ family are very aware,” she says. “They want to see Mason, so they’re willing to do anything for that.”
Relatives Confused by Allergy Rules
What complicates life is that not all parents follow the recommended strict food allergy protocols. Kristen* from Toronto’s son Caleb has been diagnosed with allergies to peanuts, eggs and some seeds. But Kristen’s brother also has a son – now age 6 – who is allergic to peanuts. When her nephew was diagnosed with the allergy, her family didn’t change many of their food habits. Her brother never mentioned the allergy could actually be life-threatening, and Kristen was unaware of that. She is aghast to think she may have eaten peanut butter while sitting next to her nephew: “I could have unknowingly harmed him.”
After Caleb’s allergies surfaced, Kristen began to learn more about the condition and realized she would have to “re-educate” her parents. “Suddenly, I come along with eight million rules, and they’re like, ‘Wait. We’ve been doing this for four years with the other kid,’” she says. Kristen got through with reliable information. She talked about information from Caleb’s allergist and sent along news articles about children who were bullied because of food allergies, or who tragically died after consuming an allergen. Kristen’s mom was soon on her daughter’s side, even sharing news articles on Facebook. She simply hadn’t been aware of the allergy issues.
The same was true of the affectionate grandfather in Houston. Ever since his cheek kisses led to hives on his granddaughter’s face, Donya Mosaffa’s father handles allergies much differently. He now washes his face and hands thoroughly before coming over or he avoids nuts altogether that day. He’s mindful of having access to epinephrine and antihistamines, and he texts or calls his daughter before feeding Charlize any new foods.
For Mosaffa and other food allergy parents, there always will be nagging worries when someone else is caring for your child with food allergies, and feeding that child. But reaching a place of being on the same team for your child with the people who know you best – your family – is worth it’s weight in gold. And not only for the safety reasons. As Rosenblum says: “It is it the most positive and validating experience when our loved ones simply just understand us.”