Katelyn Reynolds is the mom of an almost two-year-old with multiple food allergies — and not all the anaphylactic kind. Her son was also diagnosed with a rare condition called FPIES (more on this below). Life since the diagnosis has been a huge adjustment for Katelyn and her family, especially considering none of them had/have any allergies to food themselves. But because food allergies are still so misunderstood, Katelyn has become passionate about advocating for food allergy awareness — one of the reasons she joined the Top 10 Challenge committee!
AllergyBites: What foods are your child allergic to?
Katelyn Reynolds: Our son has a complicated medical history when it comes to his allergies. He has IgE mediated (i.e., anaphylactic allergies) to peanuts and eggs – we know this based on past reactions and skin/blood work. He also has a condition known as FPIES (Food Protein Induced Enterocolitis Syndrome), a rare non-IgE mediated gastrointestinal allergic disorder. This presents as a delayed and severe allergic response, usually 2-6 hours after eating an offending food. FPIES does not respond to epinephrine, and sometimes requires hospital admission for rehydration. Unfortunately, our son has FPIES to many foods – his worst triggers so far being sweet potato and salmon. In fact, he has only 13 foods that he is NOT allergic to.
There is a lack of research around FPIES. So it is not well understood and is a “clinical diagnosis,” meaning there are no skin-prick tests, bloodwork, or any investigations that will help to determine a diagnosis. You simply have to feed your child the food again to see if they react. There’s also a lack of clinical guidelines or best practice standards for how to introduce foods for a child with FPIES, which is something we continue to struggle with.
AB: Can you describe the first time you realized (or suspected) he had a food allergy?
KR: We followed the guidelines for introducing peanuts and gave our son a little bit of peanut butter just after 6 months old. We didn’t think much of it, as allergies do not run in our family and we tended to enjoy peanut butter on an almost daily basis. In under 20 minutes, he developed full body hives. We phoned Telehealth and were put on hold, and by the time we spoke to a nurse, the hives had resolved. We were worried, but I don’t think we fully grasped the severity of the situation as we had never dealt with allergies before.
After the initial reaction, and a newly filled EpiPen prescription, we were encouraged to try other allergens. Dairy? Hives. Almond butter? Hives. Sesame? Hives. Wheat? Hives. Strangely enough, his skin-prick tests were negative to all these foods and he was given an umbrella diagnosis of “chronic idiopathic urticaria” (the doctor described him as a “hivey kid,” which I have a hard time accepting). This diagnosis didn’t do much in easing my anxiety for a kid with a known allergy – how was I supposed to know the difference between him simply getting hives and experiencing anaphylaxis?
I figured I’d give our son something benign, something that isn’t a “top 10” allergen. Enter the Sweet Potato. I pureed some sweet potato for him and he ate about a quarter cup. There were no hives and he seemed to enjoy it. Three hours later, he presented with a textbook FPIES response – profuse vomiting that resulted in me calling 911. This is when I learned about FPIES and how sweet potato is in fact a very high-risk food.
Since this time, he’s gone on to have many different allergic reactions to many different foods. We keep a detailed food journal.
AB: Has your child ever experienced an anaphylactic reaction? If yes, what happened?
KR: We think he may have had a delayed reaction to egg in a pancake – this was before we knew about his egg allergy. It was VERY delayed (11 hours after ingestion!), which is why the doctor is still unsure – but it was a pretty classic IgE response – vomiting, hives and sneezing.
AB: After the diagnosis, what did your grieving process look like? Do you feel that you’re in the “acceptance” phase now?
KR: My life started revolving around food, thinking about how I can properly nourish my little guy in the absence of so many foods that most people eat on a daily basis. Post diagnosis also involved a complete overhaul of our kitchen, a newfound necessity to scrutinize labels and call food companies, and educate everyone who would be taking care of him about things like cross contamination and how to use an EpiPen. We’re not in the acceptance phase yet, as we haven’t nailed down why he is having all these reactions and we’re still figuring out what he is and is not allergic to.
AB: What are your biggest challenges as the mom of a food-allergic kid?
KR: The single biggest challenge is the worry and fear that come with food trials. Will he react to this new food I give him? What will that reaction look like? Will my husband and I have to stay home all day to watch for symptoms? But the challenges don’t stop there..
- Inclusion – It’s hard seeing our son at playdates not being able to eat what his friends are eating. He doesn’t seem to notice it yet but this will soon change, and it’s hard to think about. He also can’t join in on family dinners and has to eat a separate meal.
- Child care and work life balance – We had to get a nanny, as it was too risky to have him go to daycare. Plus, because he has very limited safe foods, it would be too difficult to accommodate. I do most of the food prep and a very specific menu is written out each day. I also reduced my hours at work to care for him, trial foods at home, and attend medical appointments.
- Different advice from different doctors – Because of the complexities of my son’s allergies, we have dealt with many different specialists, including consults from six allergists, two gastroenterologists, two dieticians, two speech therapists, and an occupational therapist. Conflicting advice is often given, and in the end, I do what I feel is best for my son, even if all health care professionals are not necessarily on the same page (which happens a lot).
AB: How often did you eat out before the food allergy diagnosis? How often have you eaten out since?
KR: My husband and I ate out a lot before our son’s food allergy diagnosis, and we continue to eat out a lot – without our son! Dining out with a toddler is tough. Dining out with a food allergic toddler is even tougher. We hope that as time goes on and we better understand our son’s allergies, we will be able to eat out together as a family
AB: Where are your go-to SAFE eating spots in Toronto and beyond?
KR: Hype Food Co. is number one – delicious food, a kid-friendly environment, AND incredibly allergy-aware staff make it a very special spot for us. The only other two restaurants we have eaten at are Swiss Chalet and The Local Leaside. The Local has been very accommodating to us when we visit. They always make a point to write down his allergens and speak with the kitchen to make sure he can have a safe meal.
AB: What are some fun facts about your food-allergic kiddo?
KR: My son is a vibrant, lovable toddler. It’s so fun to see his personality emerging – he’s thoughtful and very empathetic. He loves reading books, dancing, and listening to music. More than anything, he is obsessed with hockey and it’s wonderful to see his joy when he gets to read about, watch, or play his favourite sport.
AB: A little birdie told us that you’re the Top 10 Challenge’s TOP fundraiser. Is there a secret to getting people to donate so generously?
KR: I can’t say that I have a secret, but I can say with confidence that I have a very supportive family. It has been a challenging time for us, but our family has been a great source of support. My mom in particular goes to great lengths to always make sure our son has safe foods and making sure he is included. I’m very lucky.
AB: Why did you decide to join the Top 10 Challenge committee as a volunteer?
KR: There are lots of reasons to volunteer for an allergy awareness initiative, but here are the 3 main ones:
- There’s a lot of misunderstanding and ignorance surrounding food allergies. I was guilty of not getting it myself prior to my son’s diagnosis, and I feel that it’s close to impossible to truly appreciate the severity of life with food allergies until someone experiences it themselves. So, I’m all for a cause that spreads awareness and “living a day on the plate” of a food-allergic individual.
- There’s a lack of research around allergies (even more so for FPIES) – all funds raised on behalf of the Top 10 Challenge go directly to food allergy research, which I feel is much needed.
- I also think it’s never too early to start modelling positive behaviours for our children, and by joining the Top 10 Challenge, I’m showing my son that we are capable of advocating for food allergy awareness. He will have to learn responsibility, self-advocacy, and the importance of asking questions at a young age, and there’s no better time to start than right now!