It was a day like any other. I had headed out to lunch with my coworkers. My kids were at daycare. We sat down at a table and were enjoying a laugh or two as we ate. That’s when I looked over to the counter, and everything went quiet for me. I heard a little boy laughing, as he enjoyed a slice of pie with his dad. One of life’s simple pleasures.
My eyes started to well up. I squeezed them shut and clenched my fists to suppress my anger. I was sad and furious at the same time. I thought I’d never get that moment of happiness, eating a casual meal out with my kids. That moment we all dream of when we become parents had been ripped away from me by my children’s food allergies.
Every day at about noon, I used to look at my phone. And then I’d look again five minutes later. And every five minutes after that until 1 o’clock rolled around. That’s when I’d know lunch was over at the daycare and they were getting ready for nap time. If nobody had called, it meant everything was all right. No reactions to anything.
And then in the evening, when we’d get back home and have supper, my partner and I would talk on the phone: Have they eaten? Is everything OK? Any new foods today? Are you sure you checked the ingredients? It was like that every single day. It was our routine. Seven days a week. Three times a day. We never got a break. We never had an “eating out day.” That’s the way it was – and always would be. Because until recently, there wasn’t anything that had given us hope that it could be different. We accepted that we would have to live with this underlying sense of anxiety every waking moment of every day.
Food allergies are a huge disruption in a parent’s life. The repercussions are enormous. The permanent cloud of anxiety that you carry around with you is hard to explain.
It’s always there because, yes, I have had that phone call. There are days when something goes wrong. Very wrong. Administering an EpiPen to your child and living through the psychological ordeal that comes with it is an absolute nightmare, and one you want to avoid at any cost.
It’s an extremely difficult situation to endure, and you’re not comfortable handing over the reins of responsibility to anyone else. Saving the life of a child who has mistakenly swallowed a peanut, mayonnaise, butter or any other allergen is a race against the clock. That one bite could be the one that ends their life.
Food allergies are cruel and ruthless. Wearing an EpiPen around your waist doesn’t take away your uneasiness. Because our boys were young, we were the ones in charge. But one day, they’d have to do it themselves.
They’d have to learn to live with the sword of Damocles dangling over their head. A single mistake is all it would take. I used to cry every day because the burden was overwhelming.
The anxiety doesn’t dissipate over the years. You’re thrust back into the nightmare every time an accident happens. Then, in 2015, I heard about oral immunotherapy for the first time. Our lives changed in an instant. When you have a sick child, you would do anything in your power to fix it and make their life better. And I was ready to do whatever needed to be done. I took that hope and ran with it, with the help of my partner who gave me the strength to pick myself up and move forward.
After reading an interview with Dr. Philippe Bégin from Sainte-Justine in Le Devoir about oral immunotherapy, we joined forces with other parents of children with allergies to create ByeByeAllergies.ca. A volunteer group, supported by the tremendous generosity of the people at the CHU Sainte-Justine Foundation, was set up to raise funds to open the first oral immunotherapy clinic in Canada. Everything snowballed to epic proportions after that. Thanks to our dedicated parent volunteers and our wonderful partners at the CHU Sainte-Justine Foundation, we hit our target in no time flat. We celebrated the opening of the oral immunotherapy clinic in August 2017. That’s when things changed for many children and their families.
Treatment isn’t easy. Our little four-year-old Édouard has been put through the emotional wringer and faced some sizeable challenges along the way. We have had to make huge changes to our routine. I felt like we were playing with fire when we started out. Édouard has severe allergies to eggs, peanuts, nuts and chia seeds. Watching him eat these things in tiny amounts under medical supervision and seeing these amounts grow little by little seemed impossible to me.
Eventually Dr. Bégin sat down with us to deliver the good news: Édouard could eat anything with a “may contain” label. This may seem like nothing to you, but it had a major impact on our lives. With each daily dose Édouard took, our deeply felt anxiety gradually turned into watchfulness.
Today, Édouard’s daily dose of allergens consists of one egg, eight peanuts, eight almonds, eight pistachios and one spoonful of chia seeds. A year after he started treatment, he passed his oral food challenge with flying colours. He’s officially in remission, which means he can look forward to an allergy-free life. He’ll be able to eat what he wants to. He can have fun, explore and taste different foods, just like any other child. He helps us make his omelets. He recently had his first piece of toast with peanut butter. As I write those words, my hands are shaking. It all seems so unreal.
What was once his poison is now his cure. He’ll have to keep eating these allergens to make sure his reactions don’t resurface.
Oral immunotherapy can be hard on youngsters, but for every tear that is shed, a giant leap forward is made in terms of overall quality of life.
For Édouard and our family, life has changed forever. And to add to the good news, his younger brother, Xavier, has grown out of his allergies on his own.
Yesterday, I went out to a restaurant with my boys. I sat down at the counter with them. We shared a slice of pie. And my eyes filled up with tears once again – only this time out of a sense of victory.
Alex, Véro, Édouard and Xavier
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.
