Awhile ago, I interviewed Dr. Adelle Atkinson of the SickKids allergy clinic about the process of Oral Food Challenges, and this week, I got to see firsthand what one is like. Nine months ago, our son was referred to the SickKids clinic by his paediatric allergist for an oral food challenge (OFC) for almonds. OFCs are the most reliable way to test allergies, and they're simultaneously the most coveted and most feared of all allergy tests.
Let me back up a little for you: our son was born with all the signs of having food allergies. He had incredibly severe eczema, and despite being exclusively breastfed, he had a lot of gastro distress. Suspecting food allergies, I started a full elimination diet despite numerous doctors telling us it was highly unlikely allergies were to blame for his issues. I persevered, and at nine months of age, he was skin tested and confirmed for a number of allergies. By that time, of course, he had started eating solids so we could clearly see when he was reacting — eggs, dairy, and soy were the biggest culprits at the time, so after seeing rash after rash, we adjusted his foods, too. At 14 months of age he had a severe reaction to tilapia, and that's when we were given an EpiPen and told to avoid feeding him nuts, peanuts, and seafood until at least age three.
Before he went to nursery school at age 3, he was skin tested for peanuts and nuts, and the results were positive. Now, Dr. Atkinson says it's important to note that skin testing is only 50% accurate, so there's a pretty good chance our son may not have ever even been allergic to nuts and peanuts, but who wants to run that risk? After seeing him react so severely to other food, we were definitely not interested in pushing our luck. So for years, we relied solely on those positive skin tests to label him allergic.
But. (Isn't there always a "but"?)
One Easter, a family member gave him chocolate and swore it was peanut- and nut-free, but it was not. He ate it, and had peanut butter smeared all over his little toddler face. . . without a reaction. Back to our allergist we went, and she said that his skin test was still positive, so we were told to avoid peanuts still, despite him having that exposure. Then one day he drank a glass of chocolate almond milk with no reaction. The allergist skin tested him, and it was positive so we were once again told to avoid all tree nuts. Then this past Christmas, I accidentally let him eat a struesel topping that contained walnuts. No reaction.
What was happening here? Was he ever allergic to peanuts and nuts, or were the skin tests inaccurate? We can never know, really, but we can make a pretty solid guess. I was anxious for the oral food challenge so we'd finally have definitive answers, but terrified of him reacting. How could I make him eat foods he was taught to avoid? Were we putting him at risk? The staff at the clinic reassured us that they'd never put a child through a test if the risk was too high. It's common practice now to have kids undergo oral food challenges in cases like my son's, especially given his many accidental exposures without issue. Why it took so long to get him his referral from his allergist for the OFC, I will never know, but I sure am glad I pushed to be referred,.
My advice to anyone with a child like mine is to push for annual testing, and if your child's skin and/or blood tests indicate low risk, push for a referral for an oral food challenge. Be your child's advocate, even if your allergist isn't up the most current advice for testing.
Here's a step-by-step of the oral food challenge process:
We were told to avoid giving our son antihistamines for three days leading up to the test, and to bring with us some peanut-free almonds.
We checked into the allergy clinic at SickKids at 8:45am, and our son was weighed, measured and the nurse listened to his heart and lungs.
We chatted with the allergist on duty, and they outlined the process, potential risk, and took a history of our son's exposures and reactions. She then skin tested our son for almonds — it was negative, so we were a "go" for the oral food challenge.
I was nervous. Ok, no, I was actually terrified, but keeping myself calm for our son. He was nervous, too. After being told to avoid all nuts for his entire life, it was a little scary to be told they'd be feeding him the food we'd previously stressed could kill him. He was so very brave, I could hardly believe it. Despite his fears, he knew he was in a safe place, and he was just so amazing through the whole process, asking about it, and questioning what everyone was doing.
They gave him the tiniest slivers of almond to chew up at first. He was delighted! He really loved the taste of them.
Every fifteen minutes, we watched for any sign of reaction — a change in breathing, hives, or swelling. Then his lungs and heart were checked. Each time, he was totally fine, so he was given a larger "dose" of almonds to eat.
We repeated that process a number of times, waiting in the clinic for half the day, on pins and needles. The staff was just so amazing at SickKids. They kept telling us that their mission is to "delabel" kids, and give them the freedom of knowing for sure if they have these life-threatening allergies or not. The idea of living without the fear of anaphylaxis is honestly so crazy to me, I can hardly believe it may be within reach for our son.
Nobody can tell you what tolerance level a person could have to an allergen, so even though he didn't react to the previous "dose," we couldn't be sure he wouldn't react the next time. His final "dose" was the equivalent of about 6 whole almonds.
As it turned out, he made it through even the last cup of almonds, passing his oral food challenge with flying colours.
Once the oral food challenge was over, we sat and waited another full hour to ensure no reaction was happening, and were sent on our way, delabelled for almond allergy — isn't that incredible? He was told to avoid almonds for the next 24 hours (just to be on the safe side), but to then carry on eating them a couple times a week for the rest of his life, to be sure he isn't sensitized to the allergy ever again.
What's more, the allergist has instructed us to start introducing all the other tree nuts to him at home as well. This part terrifies me. We're to introduce one nut a week, in much the same way they gave him almonds at the clinic. Slowly, bit by bit, increasing the amount up to a full portion size (which is the palm of his hand), and monitor him. They feel the risk of reaction is extremely low given his history, and that confidence makes me feel so much better.
He's also been booked for an OFC for peanuts in September, given his exposure and low risk of reaction.
We're SO thankful for the amazing staff at the SickKids allergy clinic. I'm so glad Dr. Atkinson has been generous with her time when I've interviewed her (and prodded for more personal questions about the process for my son). I'm so happy they're doing so much research and I truly hope that their afforts lead to finding a cure for food allergies. In addition to all this, they're working hard to improve the clinic's accessibility, making food challenges more readily available for patients and educating community allergists on their research and advice.
It's surreal to think that after nearly six-and-a-half years of fearing for his life every moment of the day, our son could be food allergy free before his seventh birthday.
A British restaurateur has been found guilty of manslaughter by gross negligence, and charged with six food food safety offenses, resulting in six years' imprisonment. It's a decision that could set precedence in the food industry worldwide, placing more responsibility on restaurant owners and staff to ensure safety of ingredients. Mohammed Zaman was found guilty in part due to his wholly careless attitude toward food safety. Choosing cheaper ingredients which contained peanuts over the more expensive ones which did not, he brazenly risked the lives of customers repeatedly. Paul Wilson, 38, died of anaphylactic shocks after being told the takeout food he'd ordered was peanut-free. Only weeks prior to Wilson's death, another customer of Zaman's restaurant was hospitalized due to a reaction to peanuts as well.
Customers who inquired about ingredients were told that the dishes contained almonds, but no peanuts, and Zaman denied culpability during questioning. He'll have plenty of time to reconsider his actions during his six year jail sentence, I'm sure.
The case highlights just how serious food allergies are, and how diligent those who have them must be when ordering in restaurants. Who can we really trust? What foods are safe, and what are the questions we need to ask?
Most importantly: ALWAYS CARRY AN EPINEPHRINE AUTO-INJECTOR.
In many cases, death from anaphylaxis happens because of a delay in administering the medication which can stop the reaction. I couldn't find information about whether either of these particular customers used an epinephrine auto-injector when their reactions started, but it was stated that Wilson did try to throw up when he realized he was reacting to the food. Unfortunately, that isn't an effective way to stop anaphylaxis.
Food allergy deaths are terrifying, and avoidable. While accidents do happen (I should know, I've made some really big ones), the negligence of this restaurant owner is horrible and unforgivable.
Be careful, allergy friends. Be safe.
Every year, FARE works hard to help the general public understand the severity of food allergies through Food Allergy Awareness week. As a parent to an allergic kid, this is my life every day, every week, every year. It's exhausting trying to explain why my son can't eat a cupcake, even though it doesn't specifically contain nuts. It's tiring reading the online comments about how food restrictions are "once again catering to the minority" and "inconveniencing the majority".
Yeah, I'm super sorry that my son's life takes precedence over your kid's peanut butter enjoyment, but this is the hand we were dealt. Life and death.
On FARE's website, you can find stories about anaphylaxis, and tools and posters to share with your teachers, family and friends to help others understand just what it is we're dealing with. A little empathy goes a long way, and in the last few years that I've been writing about allergies, I've seen the changes in how people perceive them. It used to be that whenever I wrote about food bans (like in this post), the reaction on the YMC Facebook page was anger and discontent, but now, the vast majority of the commenters are kind and understanding.
Here at home, Food Allergy Canada has launched a new training program for people with life-threatening allergies and their caregivers. Called Anaphylaxis in the Community: What Parents and Others Need to Know, the program is available for free at Allergy Aware.
The more people know, the better equipped they are to handle severe allergies safely. Awareness drives changes like new food labelling laws, and guidelines for testing and protection of kids in school.
Talking about allergies matters. Building awareness matters.
Spread the word!