I am still recovering from and reflecting on a hectic day of allergy testing last week - a five-hour drive into Edmonton to have two-thirds of our boys re-evaluated by means of skin prick tests. The Coles-notes version of the procedure is this: a tiny amount of a particular allergen is placed in liquid form on the patient’s skin - usually arm, sometimes back. Then that spot is pricked and the site is monitored for swelling. If the spot swells it indicates an allergy, and the larger the swelling the more severe the allergy. My boys looked like they had incredibly organized and symmetrical chicken pox. Or were attacked by military-trained mosquitoes. Itchy but effective.
Results in terms of food are as follows: Sasha is still highly allergic to fish, but may have outgrown his almond allergy. We’ll need to confirm this by means of an oral challenge – We (and by “we” I mean my husband, as I have my own nut allergies) touch a small amount of almond to his lips and see if he reacts. This is preferably done in the doctor’s office or hospital. If Sasha is indeed no longer allergic to almonds it is a small victory, as they would still be considered contraband in our house, but it would open up new culinary possibilities for him and make things like sleepovers and birthday parties somewhat less stressful for all involved. Jude is in a bit of a holding pattern – still allergic to peanuts, eggs and milk. Many kids outgrow the latter two allergies, and can often tolerate these foods in the cooked state, so we have the green-light to test small amounts of cooked milk and eggs in his diet. Ingesting traces of eggs or milk has typically resulted in vomiting and/or hives but not breathing problems, so the thought of giving him a “normal” chocolate chip cookie is less terrifying than a peanut butter cookie, but still a scary thing to do to your kid after years of vigilantly not letting him eat these things. Not to mention his trepidation at eating something “unsafe.”
The list of environmental allergens is growing. Both Sasha and Jude are allergic to many of the trees in our yard, the grasses in our fields and the weeds in our garden. Plus indoor stuff like dust-mites and mould. (Actually we all are except for Finn. He bucks the trends, including genetic ones.) Paul and Jude have asthma. Sasha and I have asthmatic reactions to environmental allergens, but we are not affected year-round to things like exercise and cold. Jude and I spent two hours in an ambulance when he was three-years-old, racing to a bigger hospital because he was so close to intubation. I have spent many hours in the emergency waiting room with huge welts covering so much of his body he looked like a burn victim. Sasha was rushed to hospital twice with anaphylactic reactions. We covered Jude’s hands with cotton socks when he was a baby because his eczema was so bad he would scratch until he bled. Heartbreak and anxiety come with the territory.
If you have an anaphylactic reaction that requires an epinephrine injection there is a possibility that you may still require a second dose. This is crucial for us as we live and go to school more than fifteen minutes away from an emergency room. So we each need to carry two doses. Twinject is an auto-injector similar to an Epipen but with a back-up syringe dose. On any given day we collectively cart around three Twinjects (or six Epipens), three Flovent puffers, four Ventolin puffers, three nasal sprays, Benadryl capsules, Children’s Benadryl syrup, Claritin tablets, Kid’s Claritin syrup, three MedicAlert bracelets and two kinds of topical allergy cream. We don’t travel light. Or cheap. And we’re not very spontaneous, but I like to think we’re responsible.
This might sound like a lot to deal with, and it is, but it isn’t a new issue for our family to have to cope with. I was diagnosed with a nut allergy at age six. We kept an ana-kit (refrigerated epinephrine syringe system) at home and at school, and presumably travelled with antihistamines. I have worn a Medic Alert bracelet just about every day since. I have had numerous reactions from both ingestion and cross-contamination of nuts – at school, parties, restaurants, arenas, work and church. I was rushed to emergency on my high school grad night after eating a piece of cake that contained walnut extract. A friend had to jab my Epipen into my leg and rush me to the hospital after we worked the phones for a library fundraiser. (The admitting physician was working on his bedside manner – as he monitored my oxygen saturation and blood pressure he cheerily told me stories of all the nut trees he had in his yard as a child.)
I am credited with saving a life because of my allergy. When I was in elementary school the teachers were asked to practice administering the anakit in case of emergency. They didn’t make simulator ones like they do now, so the health nurse gathered up a bunch of expired epinephrine and they practiced by stabbing oranges. When I started grade six, my teacher from the previous year shared how she had been on vacation in Europe, and someone stumbled to her doorstep begging her to inject her epinephrine as she couldn’t seem to do it herself. Practiced in the art of stabbing oranges, she did, and the woman lived. My teacher was so proud that because of me she had saved this woman’s life. I was pretty freaked out.
The experience on my husband’s side of our family is more tragic. His older sister died from her peanut allergy. She had an anaphylactic reaction while on a school trip to France at age 16. I never had the pleasure of meeting my sister-in-law-in-spirit, but I think of her often. I pray that I honour her memory by raising her nephews in safe and meaningful ways. I think it was hard for my in-laws that their first daughter-in-law had the same condition to which they lost their only daughter. It is a weird coincidence and a constant reminder of a profound loss. Maybe some wounds have to be re-opened before they can heal, I don’t know. Only God knows. But there are layers of scar tissue.
So this is our life. It is a consolation to me that these burdens are familiar to us. The fact that my kids have food allergies is well within my normal realm of experience. It wasn’t an unfamiliar (or particularly unexpected, given the genetic aspect) diagnosis. It isn’t something out of left field, not like autism or Down’s Syndrome would be. We are used to reading labels, asking questions, seeking out “safe” food. We don’t tend to eat out in restaurants very much. All that time I save on reading menus I spend scouring labels in the grocery stores. Yes, lots of labels and lots of questions – Can Sasha go fishing if we don’t allow fish in the boat? Should we raise our own chickens? Should we try desensitization? How can we travel safely, dealing with different languages, norms and cuisines? What can I make for supper tonight?
I have to remember that not everyone else is as educated about allergies as I am. I need to be firm but forgiving to the kindly lady who tries to slip my child a cookie behind my back. Not everyone knows that most cookies are dangerous to him. I need to ignore the “she’s-so-over-protective” eye-rolling of another mom who offers my child a glass of orange juice. Not everyone realizes that some brands of juice and yogurt are supplemented with fish oil. I need to be gracious when I receive lip balm with almond oil in it for Christmas. Not everyone is as vigilant in reading labels of everyday items as I am. I need to be less defensive and more assertive when someone tells me I’m too paranoid. Not everyone has experienced being sorry instead of safe.
May contain nuts? Maybe. Maybe not. But I'm opting for safe rather than sorry.