I had my first anaphylactic reaction in my late twenties, while traveling in Spain. It was a scary and surreal experience, being far from home, and among people I hardly knew. I was treated intravenously with epinephrine and Benardryl in a small hospital, and within a few hours I was released — just in time to board an early-morning tour bus to Pamplona to see the running of the bulls. Yup, surreal.
The worst part was not knowing what triggered the anaphylactic reaction, since I’d never had one before, despite having asthma, hay fever and eczema since I was born.
I had two more severe reactions in Vancouver the following year, which were treated at in the emergency room at Vancouver General Hospital, which confirmed I’d developed a serious allergy to bananas. I was glad to finally figure what was causing my reactions (which had started out as a series of raised, red rashes), and grateful it was an easy allergen to avoid.
My children would not be so lucky.
The first time I tried giving my then-infant daughter, Mary, scrambled eggs, she broke out in hives all over her face and down her neck, chest, hands and arms. She vomited when a friend gave her soy milk to drink a year or so later. With a family history of peanut allergies, we asked for a referral to B.C. Children’s Hospital for allergy testing, which confirmed egg, soy, peanut, tree nut and legume allergies.
Our son, Frank, is a year and a half younger than Mary, and soon after birth he developed bumpy, red rashes all over his tiny body, despite being fed only breast milk. Off we went back for allergy testing at B.C. Children’s Hospital, where they identified allergies to peanuts and nuts, eggs, wheat and dairy. I was instructed to eliminate all of those from my diet, which I did, and Frank’s rashes cleared up within days.
We all also struggle with other allergies — to pollens, molds, animal dander, dust mites — and it’s a lot to manage as a family, along with asthma and eczema.
I became adept and creative at finding ways to feed my family while keeping them safe (although it was time consuming and exhausting), but it was even harder sending them off to pre-school, kindergarten, school, camps, birthday parties and all the things that all families of kids with life-threatening allergies have to cope with.
The teenage years were especially hard, as its a time of experimentation, risk taking and some rebellion (including occasionally refusing to carry an epipen). As parents, my husband and I struggled to find a balance between giving our kids independence and allowing them to participate in normal activities, while knowing a bite of the wrong snack could be fatal.
We had several close calls and trips to emergency rooms over the years, and we used epipens after exposures on several occasions. We were lucky in those cases to be close to hospitals and to get prompt treatment for severe reactions, and I try not to think too hard about different outcomes.
I was especially nervous when Frank was 18 and set off on a backpacking trip through South East Asia. I insisted he take epipens, wear a medic alert and carry laminated cards in all the languages of the countries he was travelling to, explaining his allergies. Yet I couldn’t help wondering if that would be enough to keep him safe. Fortunately, he managed to avoid his allergens, but mostly by sticking with familiar chain restaurants and missing out on local cuisine.
Frank and Mary are now 28 and 30, and I still worry about them getting severe reactions, especially while travelling or visiting me at my home in the Gulf Islands, where emergency medical care is limited. I recently travelled to Hawaii with Mary, and as always we stocked up on “safe” snacks before the flight as she can’t risk eating something on an airplane that she isn’t completely sure is safe. She recently had a frightening close call at a familiar “safe” restaurant, when she discovered two peanuts at the bottom of her salad bowl.
Since I learned about the FAIT program, I’ve been thinking about how different and more care free our lives would have been if my kids had been able to access the treatment when they were young. I hope more families get access to this exciting and effective treatment and that kids with allergies can enjoy daily life and travel without the kinds of worries we’ve carried and continue to (although I’m hoping my adult kids can eventually access the adult version of the program, as it expands).
Life is challenging enough for busy families without having to double check everything their kids eat and the FAIT program is such a wonderful option to make life easier, safer and more enjoyable for so many families.
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