Raising A Child Who Has Multiple Life-Threatening Allergies

Our introduction to the world of severe food allergies started the first time I fed my son Zachary rice cereal when he was a baby. He is now six and has severe allergies to dairy, peanuts, tree nuts, and sesame seeds. Looking back he did the allergic march—when children start off with eczema then allergies then asthma, which he developed by age one. His last anaphylactic reaction was to trace exposure to dairy on his 5th birthday while at his previous school and required two EpiPen Jr doses.

Unlike so many other medical conditions, children with severe allergies really require the support and accommodation of those around them to help keep them safe. Because of this, we always try to do our best to raise awareness for anaphylaxis, especially as many do not realize that it's not just nuts that can cause life-threatening reactions. For our son, even coming into contact with surfaces that have traces of an allergen, including dairy, can cause him to react. For example, if you had milk in your coffee and then gave him a kiss on his cheek or if he played with a friend who hasn’t washed their hands after eating one of his allergens, these situations cause Zachary to react and swell up with hives.

This can make ordinary activities difficult without appropriate management. Any time Zachary is not in the safety of our allergy-free home, he is at risk of a reaction. Therefore, Zachary never leaves home, even to play outside, without wearing his EpiPen (epinephrine auto-injector) in his special EpiPen carrying belt around his waist. We also always ensure he has an extra EpiPen at key locations, such as by our front door, in his school classroom and in the school office. I always make sure the ones we supply to the school will not expire during the school year so we don’t have to worry about replacing the ones at his school until the start of the next school year. You can register your EpiPen on the EpiPen website to be reminded by email or text if your EpiPen is about to expire.

He also always wears a medical alert bracelet which never comes off no matter what. In addition, we always carry a medical bag with us which includes an extra EpiPen, his asthma puffers, his asthma peak flow meter (which helps us to know how well his lung capacity is doing), an oxygen sensor, Benadryl, and lots and lots of wet wipes!

Anyone caring for him has to be taught about anaphylaxis and asthma, and must be able to understand how to keep him safe—including how to read ingredient labels (whey, for example, is another name for dairy), how to administer his various medications, and when and why you would need to do this. We also have an EpiPen training device which has become a great tool to assist us with training others on EpiPen. Zachary has even started to help with demonstrating and giving caregivers a turn to try with the EpiPen training device. He even goes over the signs and symptoms of anaphylaxis with them.

Finding appropriate care for a child with multiple severe food allergies has been challenging. I remember trying to find childcare options and having my money returned to me from one daycare that we tried to enroll him in as they changed their mind about being able to accommodate his health issues. We eventually found a private school that said they could make the appropriate accommodations and assured us they had the highest level of anaphylaxis management. Ironically, this is where he suffered a life-threatening allergic reaction.

The public school that he went to last year is still working on improving their anaphylaxis management while balancing the community’s strong attachment to extensive fundraising through food, especially dairy. With pizza days every week, frozen yogurt Fridays monthly, and week-long bake sales, I joined the School Community Council, that organizes these events. My hope is to start creating change for a more progressive, inclusive, and safer school environment for those with severe allergies.

Implementing change, however, while minimizing the hostility from other parents and potential for retaliation is a long road.

This means Zachary still misses a lot school as we keep him home on pizza days for example due to the increased risk of exposure, but there are a growing number of those who do help and care, which is so greatly appreciated!

To also help build much-needed awareness about anaphylaxis and to help find a cure, we volunteer every year with AAIA (Allergy/Asthma Information Association) EpiPen Take Action Event. Taking part in this event has provided our family with a great opportunity to reach out to the community and build an understanding through sharing our story. It has empowered my son to know that he is not alone and that there are others just like him. It also encourages him to speak with confidence to others about his allergies and asthma, what it means, and how other people can help keep those with severe allergies safe.

Zachary is becoming his own advocate which is amazing to see! He recently explained to me that he wants to make even more friends, because his friends understand about his severe allergies and can tell others about it too so they understand. Therefore, the more friends he has, the more people will understand about allergies. The AAIA’s EpiPen Take Action Event gives Zachary an opportunity to share his story and build that understanding we all hope for, and gives us all hope that one day those with anaphylaxis, like Zachary, can have long healthy lives without constant daily threat.

For all the challenges and care that may go into everyday life when you have a child with severe allergies, it has brought our family many positives. For starters, I’m sure our family is significantly healthier now from having to prepare most of our meals from scratch and not being able to readily eat out and you can never order take-out. It definitely contributes to giving us a much healthier lifestyle. It has also given us a great opportunity to teach Zachary how to cook and bake from a young age, learning about measurements and science along the way, and we may not have spent as much time with him in the kitchen teaching otherwise (as we’ve also had to teach ourselves!).

Living with severe allergies has also improved our ability to communicate and has cemented us with many lasting friendships as we discover those who have provided compassion and care. Those close family and friends always do their best to help Zachary be included in fun activities by working with us to help make a safe environment for him to participate. It has also enabled us to become that much more entertaining as we usually host gatherings at our house to ensure Zachary can be involved and safe, which gives our children an opportunity to share, give, and be welcoming.

Most of all, my son Zachary has taught me so much about just enjoying life to the fullest. He is such a bright, brave, funny, and happy child full of life and adventure and brings so much light to those around him. We appreciate the everyday small things and have incredible perspective on what really matters. He makes us all truly appreciate life.