Jyoti Parmar is mom to 3 children—and 2 of them have food allergies. Sahil is 13. He is allergic to peanuts, soy and tree nuts. Jaya is 7. She is allergic to dairy, eggs, peanuts and tree nuts.
KO: Can you describe their very first reaction?
JP: One morning, shortly after Sahil turned 2, I made him a jam sandwich with the same knife I used for a peanut butter sandwich. I hadn’t washed the knife, but I had wiped it with a paper towel. I washed dishes as he started to eat. Suddenly, he started crying, “Mommy, my tongue hurts.” I thought he had bitten his tongue while eating. “It’s okay, just keep eating,” I called, thinking he had bitten his tongue. “Mommy, my tongue is hurting,” he cried again. His voice sounded different. I looked at him and saw a rash around his lips. He was holding his tongue with one hand. I quickly pulled him out of the high chair and saw the rash was on his neck. Then I took his shirt off and saw red blotches on his chest. I knew then that he was allergic to peanuts.
Since it was his first reaction, we did not have an EpiPen, but luckily the reaction did not progress. However, if the above reaction happened now, I would administer Epi because he complained of intra-oral symptoms—plus there was a skin reaction.
My daughter Jaya had her first reaction when she was only five months old. I was feeding Jaya her first cereal when she developed hives around her mouth, chin and chest. She did not appear to be in any discomfort. The cereal contained skim milk powder and the dairy allergy was later confirmed with a skin test. At 1, she was also diagnosed with allergies to egg, peanut, tree nut and fish. She is no longer allergic to fish. (We don’t know if she outgrew it or was misdiagnosed as it was only based on a skin test which are known to have a high rate of false positives especially in kids with eczema.)
KO: Did either of them ever have an anaphylactic reaction?
JP: When Jaya was 2, a family member gave her a “100% fruit” gummy candy which when we inspected the package later said “may contain dairy.”
After she ate the candy, I noticed a hive on her cheek but it subsided within minutes, but then she became visibly congested. Clear mucus was dripping from her nose, and it appeared like she was having difficulty breathing. We decided to give her Epi. My husband held her body steady and I injected the EpiPen into her thigh. Her congestion subsided immediately and she could breathe. We called 911 and the ambulance took Jaya and me to the nearest hospital. They monitored her breathing, oxygen saturation, and heart rate during the ride. By the time we reached the hospital, she was having difficulty breathing again. They gave her oral prednisone, ventolin, and an oxygen mask. My husband had to drop my older 2 kids off at my parents’ home before joining me at the hospital. It was difficult for them. My son was extremely distressed and thought Jaya was going to die. He still vividly remembers that day. At the hospital, Jaya was monitored for 4 to 5 hours before we were discharged. I was carrying her out when I noticed she was struggling to breathe again. We headed back, rushed by security, and found the ER doctor who had been treating us. He checked Jaya and said we were right and that she would not be able to leave yet. After another dose of prednisone, ventolin, and more oxygen—and 4 more hours of monitoring—we were discharged.
KO: What did your grieving process look like? Do you feel that you’re in the “acceptance” phase now?
JP: For me it is more like a pendulum—I swing back and forth from grieving to being resigned about the whole thing—sometimes in the course of the same day.
Like all parents, my husband and I wanted our children to see and experience all the wonderful things we got to experience… and much more.
But all that changed when we discovered that our children were allergic to everyday foods. It was hard to understand that their lives could be threatened by something they ate and they would always have to carry epinephrine with them.
When we discovered my son’s allergy, my husband and I grieved for the loss of freedom and spontaneity we had enjoyed and taken for granted up to that point. We quickly understood that complete avoidance of the allergen was the only way to prevent a reaction. We have to be constantly aware of everything around them, and what everyone is doing in order to avoid contact with their allergens and keep them safe.
There is acceptance in that I have to accept it in order to go on, in order to ensure my children’s safety and advocate for them.
It is not a wholehearted acceptance as I would rather they not have the allergies and that is why we have started a treatment called oral immunotherapy (OIT).
KO: What are your biggest challenges as the mom of a food-allergic kid?
JP: For me and my family, there are many challenges. Together, we are dealing with allergies to dairy, eggs, peanuts, tree nuts, and soy. My top 3 challenges are:
1. Dealing with my own fear and anxiety is my personal challenge. Because of my children’s food allergies, I live with the fear of a reaction. The fear and constant vigilance is extremely stressful, and since food is involved in all aspects of life, the impact of this stress is great. If they only stayed inside the home and never had to venture outside, it would be easy to keep them safe. This, of course, is not desirable. They need to go to school, be with friends, participate in life. But food is all around. I am constantly worried if something goes wrong… if they are not feeling well… will they tell someone? Or if they are unable to say anything, will that person recognize the signs of a reaction and know what to do—and give the EpiPen in time? As they get older I wonder: Will they have their EpiPen easily accessible to them and be able to self-administer it?
2. Food eaten at home is safe, but preparing that food is not so easy. We cook from scratch because most packaged foods contain the allergens we are avoiding. I bake my own bread, cookies, and muffins but I still need basic ingredients like flour—and there’s only one or two brands without a soy warning. I used to buy Fry’s cocoa but now it says “may contain milk,” so I have to find another brand of cocoa. I spend hours in grocery stores looking for safe foods, and sometimes even when the ingredients look ok, I call the company and am told that it may contain one or more of our allergens, so I cannot use it anyway. The options for good, natural, allergen-free food is limited and expensive.
3. Food allergies are most dangerous when eating away from home. A trace amount of a food allergen can be found anywhere. For example, one time we were on a plane and they served hot cheese pizza behind us. Jaya started to get hives and wheeze. I was petrified that she may go into anaphylaxis. Thankfully, they allowed us to move her to the front of the plane where we could no longer smell it and she was okay. We don’t go out to eat with Jaya or Sahil for fear of a food containing an allergen we cannot see. Imagine getting an invitation and, each time, having to interrogate your friends and family about the food being served and going over chances of contamination—these conversations are difficult for us, so generally to avoid possible friction, we don’t go out.
KO: How have your children dealt with their food allergies?
JP: Because they have lived with allergies all their lives, they do not know what it is like to live without them. It is part of them, so they deal with it. Because of her multiple allergies (especially dairy), my youngest does notice the events she cannot attend. As she gets older and notices the exclusion, she gets sad and jealous. Recently she said, “Why do I have food allergies? It’s not fair that I can’t do what other kids are doing or eat what they are eating.” It makes her feel sad and left out.
For example, Jaya joined a kids’ soccer club last summer (for the first time) and at the end of the summer, there was a celebration. But it was pizza for everyone, so Jaya was excluded—even though we had informed them since the start of the season. When I asked about including her, the soccer club offered no response.
My son accepts it and brushes it off if he is not invited somewhere or unable to do things with his friends. Recently, he was not invited to a friend’s house for a sleepover because the friend’s dad said they eat peanut butter all the time. Just last month, he was not invited to a birthday party because it was going to be at Mandarin.
Sahil is adept at reading labels and very careful about the food he puts into his mouth. He will choose not to eat if he is unsure about any ingredient. He shows incredible self control and self discipline. I guess that’s the silver lining of living with food allergies. Because they both regularly deal with exclusion, my children are very empathic and aware of any social injustice. My non food-allergic daughter is very protective of both of her siblings and speaks out on their behalf if they are around foods to which either one is allergic.
KO: How often did you eat out before the food allergy diagnosis? How often have you eaten out since?
JP: We used to eat out at least once a week. After the diagnosis, we have eaten out as a family only a handful of times. My husband and I do eat out (just the two of us), but not as often as we used to… and we do try and take our non food-allergic child out to eat so she can have a “normal” life.
We have attempted to take Jaya out a few times, but each time ended up in a reaction so we have stopped taking her out. My son does not want to go out to eat—he says he wants to feel safe eating and that means eating only home-cooked food.
KO: Where are your go-to SAFE eating spots in Toronto?
JP: For us, it’s just Sorelle and Co. There is no other place where I feel fully comfortable eating out with my food-allergic kids. We tried a few times, but I did not get the feeling of understanding from the servers/chefs—some just told me they could not make a safe meal. I appreciated their honesty and we left. That was a few years ago. I understand that there are places that people with multiple food allergies go, but so far we don’t feel comfortable. As the parent of 2 kids with multiple and different food allergies, I have to negotiate with others, when it comes accommodating them, several times a week (sometimes several times a day), so it is exhausting to have to go to a restaurant, and figure out the ingredients, and judge if the person preparing the food really gets the concepts of cross contamination, etc.
KO: Can you tell me why Sorelle and Co. makes you feel safe?
JP: Lucky for us, their food is free of all of our allergens. Knowing their allergens are not on the premises is comforting—I can let my guard down a little. (But I still feel a little anxious because human error is always possible.)
At first, when I went there, I was worried because there were no ingredients lists. As a food-allergy mom, I read and re-read labels multiple times a day. And I call companies for “may contain” information multiple times a week. So not knowing the exact ingredients was unnerving. We shared our allergens with the server, and she assured us we could order anything. Since Sorelle and Co. opened in August 2016, we have gone there many times—mostly for a sweet treat. It would be great to have a restaurant in Toronto that was free of their allergens, like Montreal’s Zero 8.
KO: Can you share some fun facts about your food-allergic kids?
JP: Like most 13-year-olds these days, Sahil loves his iPod and has 2 Instagram accounts (he loves taking pictures of sunsets and posting them). He is concerned about climate change, and recently started a blog. He loves playing soccer and hanging out with his friends in real life and online!
My daughter Jaya loves music—she keeps a pen and paper in the car to note down her favourite songs so her brother can add them to her iPad at home. She sings all the time. She loves to play badminton, paint, and hang out at the park with her family and friends.
KO: Tell me about Walk for Andrea.
JP: My husband and I founded Walk for Andrea after we learned of the death of 18-year-old Andrea Mariano in 2015. The death hit close to home because she was a teen from Thornhill (where we live), and she was also allergic to peanuts and dairy. We reached out to Andrea’s parents to tell them about our idea for a fundraising walk. Together we could work to turn pain into purpose. So they joined us, and with friends and family we formed a planning committee. Last fall, we held the 1st Walk for Andrea and raised just over $17,000. This year, we hope to raise $35,000 during the second annual walk.
All funds raised go to the Sick Kids Food Allergy and Anaphylaxis program to find a cure for life threatening food allergies. Donations can be made here (from May 2017 onward).