From the Allergic Living archives. First published in 2006.
IT WASN’T the high point of Christmas 2003. During an afternoon party for friends and family at her in-laws’ home, Linda Wagner of Regina, Saskatchewan made repeated efforts to keep some distance between her tree-nut allergic son, then 4 years old, and the gourmet nuts brought as a gift by friends who knew nothing of his condition.
“I kept moving the bowl of nuts off the table and my mother-in-law kept putting it back on, until she got mad and I finally had to create a scene. Afterward, I asked when she was going to understand that peanuts and nuts can kill her grandson. Was he going to have die for her to get the severity of it?”
The answer was no, of course. To Linda’s relief, the light bulb clicked on for her mother-in-law that day. “She now completely understands the seriousness because she loves her grandkids more than anything – even food.”
It’s a frustrating problem for parents with allergic children: sometimes family members just don’t grasp what food allergy is and how serious a reaction could be. This lack of understanding is often on display during the frequent family get-togethers of the winter holidays. But mistakes can happen throughout the year.
I clearly remember the Easter at my sister’s house in 2001. Our daughter, Cayley, then 3, and her cousins grabbed their baskets and raced into the backyard. As my husband and I watched our daughter gather eggs filled with candies that my sister had purchased – we suddenly realized that we hadn’t checked the package labels. My sister waved away our concern: “Don’t worry, there was no warning on any of them.”
Our daughter had just been diagnosed with a peanut allergy, so we decided to check despite the assurance. There it was, under the ingredients, on all of the candy: “May contain traces of peanut.”
It happens no matter what the allergen. Leann McMonigal of northern Illinois recalls the day her mother-in-law sent over homemade cookies. She had labelled them “dairy-free” for her dairy-allergic grandson. “She had included the recipe,” Leann says. “The first ingredient was butter.” Leann just shook her head, and the teaching began.
Among allergic parents, there are innumerable scary stories of dealing with relatives. This can be one of the biggest challenges in adapting to life with an allergic child. The failure of a grandmother or an uncle to treat a child’s allergy with the required diligence can be jaw-droppingly difficult to fathom. These, after all, are people who love that child and would never intentionally hurt him or her.
on Feeding Rules
THE EXPERTS say that teaching the relatives may take considerable effort. The education should begin with the basics: relating that foods can have different names on ingredient labels and writing those names (such as casein for milk or albumen for egg) down for them. The concept of cross-contamination will need to be fully explained so the relatives get that picking nuts out of a cookie does not render it safe for the nut allergic, or that a knife that touched a food that may contain an allergen has to be thoroughly washed, with soap, before it’s used to cut ingredients for an allergic child’s meal.
But beyond these basics, the parent of the allergic child may encounter ignorance from relatives who think “a little bit can’t hurt” or who believe in Old World ways and perhaps home or naturopathic remedies. Deena Mandell is an associate professor of social work at Wilfrid Laurier University who counsels families struggling with chronic illness and severe allergies. She says to explain to relatives that feeding an allergic child his allergen is misguided, and a dangerous practice; “that research indicates it’s not safe, especially in a person at risk for anaphylaxis.”
Mandell, who has two food-allergic sons, says some people may inaccurately compare diabetic food restrictions with food allergy limitations; since a little sugar is safe for people with diabetes, perhaps a little egg, dairy or peanut is safe for a child with food allergies.
Dr. David Fischer, an allergist in Barrie, Ontario, has also seen this in his practice. “Well-meaning grandparents mistakenly think that allergen exposure will strengthen a child’s immune system, and it is sometimes necessary for me to write a letter explaining that strict avoidance of the allergen is the only current treatment.”
In some families, there is an added factor: that often-complicated dynamic between a mother-in-law and daughter-in-law. Amy Frankel from Long Island, New York, remembers when her son was first diagnosed with peanut allergy. “My mother-in-law thought I was neurotic. She would roll her eyes when I would check ingredient labels and get huffy.” If tension already exists in this relationship, it’s usually exacerbated by a child’s food allergy.
Mandell notes that it is the mother who tends to take the children to the doctor, and do all the planning and trouble-shooting about the allergy. “If her partner is not involved, he may not be able to back her up when she’s explaining the allergy to his family, and they may take their cue from his apparent lack of concern.” To avoid this, Fischer recommends that both parents attend every allergy appointment. This allows both to hear the same information from the allergist.
Use Videos, Explain and
Don’t Always Try to Delegate
SOME FAMILIES, are tougher cases. Susan Carter* of St. Catharines, Ontario, can vividly recall the heartbreak of missing a Mother’s Day brunch with her side of the family. They had refused to change the restaurant location after discovering that most of the dishes were fried in peanut oil. “My son’s peanut allergy came on when he was 5 years old,” Carter says, “so it seems to be harder for my family to understand than if he had been allergic from age 1. It seems to me that they are ‘waiting for us to come to our senses’, while we are awaiting the same from them.”
Nancy Wiebe, creator of the Calgary Allergy Network, an affiliate of the Allergy/Asthma Information Association, says that in a situation like this, you have to be persistent and appraise the risks. She recommends education, patient diplomacy, and even firmness in the manner in which you explain your child’s needs. It can take time for your concerns to be taken seriously. “Advertisers know that we have to hear a message many, many times before we really hear it,” she says. With allergies, this also holds true.
Mandell agrees that communication is key – and stresses the importance of trying to stay calm while discussing, offering to provide missing information rather than arguing. She finds this particularly helpful for weeding out inaccurate or anecdotal information. The experts also recommend watching a video about anaphylaxis with family members rather than just providing reading material.
“Often, in-laws don’t read the information you give them,” Mandell says. “You can watch a video together, and you can pause it or rewind it and deal with each area they may not understand or they disbelieve.”
Wiebe also points out that if your child is old enough, she should be taught the “away from home” eating rules, in which she will eat only her own food or food approved by her parents. She should be taught to feel comfortable in politely refusing questionable food that’s offered – sometimes insistently – by relatives.
The professor reminds that coping with allergies is a big undertaking. “Expecting grandparents to be responsible for reading labels is asking them to be experts in the same way that parents have to be, and that’s not fair. The trick is to make grandparents understand that this is not a trust issue; rechecking labels is part of a parents’ routine.”
The same holds true for all relatives. Remember our Easter Egg hunt? My sister apologized for missing the warnings, and we exchanged the unsafe candy for safe treats for Cayley. It also made my husband and me realize early on that, ultimately, we are responsible for our daughter’s allergy. At least until she is old enough to take on the job for herself.
*Name changed by request
Visiting the Relatives
Here are some tips from the experts to make family get-togethers easier:
- Teach relatives the different names that your child’s allergen can have, but don’t expect them to become expert label readers. That remains your job.
- Bring food for your child to eat if there is too much risk of cross-contamination in the kitchen.
- Pin an allergy awareness button on a young child (especially if he is non-verbal) to serve as a constant visual reminder.
- Do not assume that allergy education is a one-shot job for relatives. Call prior to the gathering to discuss the menu, then start get-togethers with a brief reminder about your child’s allergy.
- Assess risk according to your child’s age, allergy awareness and maturity. Young children put lots of things into their mouths and need all allergens put out of reach; older kids should simply follow their “away from home” rules about eating (e.g. eating only their own food or food approved by their parents and that it’s correct to turn down questionable food from other adults, even insistent relatives).
- Make your relatives aware that your child never eats without his epinephrine auto-injector (and perhaps inhalers) on hand. This drives home the seriousness of food allergy.
- Asking for, rather than demanding, a relative’s help works amazingly well.
- Family relationships can be complicated; if a problem pops up with food, stay focused on that and avoid dragging other issues into the situation.
- Remember that no one wants to harm your child; stay positive, take a deep breath before you address potential problems. And remember to have fun.
First published in Allergic Living magazine. To subscribe to the magazine, click here.
¬© Copyright AGW Publishing Inc.