Educating Ourselves to Deal With Our Son's Food Allergy

Our journey with severe food allergies began within days of our youngest son Gavin’s birth—he’s now 3 1/2 years old. Gavin developed eczema all over his body soon after birth and he suffered from colic. He was not feeling well and I had no idea why. I was breastfeeding and at no point did it occur to me that his issues were related to food allergies. We were asking questions and had no answers. When he was a baby someone suggested he might be sensitive to something I was eating. It clicked! I went on an elimination diet trying to figure out if his symptoms were related to food. I had eliminated many of the top allergens from my diet, but he wasn’t getting better.

Introducing solids at six months was tough — he wouldn’t eat anything and screamed every time I put food near his mouth. I was at my wit's end and didn’t know what to do.

One day my sister was visiting and she put a tiny bit of hummus on the end of a carrot stick. He put it in his mouth and had an immediate severe allergic reaction. His face, neck, and eyes blew up into hives so bad he was unrecognizable. He began to scream and scratched his face so bad he was bleeding. I panicked and threw socks on his hands to stop him from scratching and rushed him to the hospital. While waiting to see a doctor the nurses were constantly checking on him to make sure he didn’t get worse. By the time the doctor saw him he had recovered. The nurses were amazing and warned me that the first reaction is usually mild and that the second reaction could be much worse. I saw my family doctor the next day and got a referral to an allergist for testing and was prescribed an EpiPen (epinephrine auto-injector). 

It turns out Gavin is severely allergic to sesame seeds (sesame oil, tahini, etc.). Further testing revealed that he was also allergic to soy, eggs, fish, and shellfish. He was also sensitive to wheat and dairy. All I could think was ‘what the heck am I going to feed this kid?’ I didn’t know what to do. I didn’t know anyone within my close circle of friends who had dealt with this before and I felt very alone. I did a lot of reading online — but despite all of the wonderful resources I found, I wasn’t prepared to deal with this or reach out to people.

Over the next little while, we began to make adjustments and he started to feel better. 

The severe food allergy diagnosis was tough on our family. My rational mind knows that things can be much worse, but at the time, I was overwhelmed and couldn’t cope. We were desperate to figure out what was bothering him. It affected my older son, Owen, who was 3 years old at the time. I was having such anxiety that I often remember him saying to me “Mommy, why can’t you just be happy?” (insert tears here) My husband is an amazing father and teammate, and really did his best to try to help us all get through this.

One of the biggest challenges for us was helping our family understand his severe allergies and encourage them to make adjustments that would keep him safe. This was stressful at times (difficult to understand when you haven’t been there), but we are in a much better place now.

Thankfully, he has outgrown many of his severe allergies and he is now eczema-free. He is still allergic to sesame and fish and we are exploring environmental allergies as he still has skin sensitivities. Fortunately, we have avoided exposure to sesame and he has not had any allergic reactions since the initial reaction as a baby.

We have relied on the resources and information we found on the EpiPen website. We registered our EpiPen online to be alerted of EpiPen expiry dates, and we ordered the EpiPen training device to teach family and caregivers how to use it.

We are vigilant, we read food labels very carefully, and carry two or three EpiPen Auto-Injectors everywhere we go. I keep them in my purse and Gavin always has them in his backpack when he’s not with us. We sometimes wonder if we should put a sign on our door that says “Do you have your EpiPen?” as there have been a few times where we’ve had to return home because we forgot them!

When he starts school in the fall, he will have a few EpiPen Auto-Injectors at school (both on him and in the school office). I am nervous about the challenges we will face when Gavin starts school and camps. Sesame is not a well-known allergen and I’m worried about the reaction I’m going to get from parents. 

I know that there are many families out there who face allergies and other health issues much more severe, and I know how difficult it can be. It has been a difficult journey for us and I’m just glad that we are on a good path to managing the allergies to the best of our ability. 

Having a child be diagnosed with severe food allergies can be very overwhelming and I encourage you to reach out to others in the same situation and take advantage of the resources available.  A good place to start is the EpiPen website!