Finding My Village and My Voice After Anaphylaxis

July 25, 2017

 

 

 

I still remember all the details from that fateful day; the heaving, the crying, my baby calling out to me from the back seat of my car, which was filled with that thick sour smell. I could feel my pulse pounding in my ears, and my poor little girl was petrified, sick, and unsteady, as we sat at a rest stop on our way home from vacation. I had already driven nearly 4 hours without much sleep the night before, when I realized my two year old daughter was going into anaphylaxis. Her fleshy lips swelled at the corners, and her body was itchy, blotchy, and red. She was vomiting over and over again, and her little heart was racing. She couldn’t stop sneezing and began to wheeze. I had the EpiPen clenched in my hand, but I couldn’t bring myself to use it. I was terrified. What would happen? Would it hurt her? Would it kill her? I choked, froze, and instead, I called 911 and ran outside to the ambulance, carrying my daughter in my arms, unable to feel my legs. We were both in shock. The firemen who attended to her were young and kind, and they assessed her symptoms very quickly and gave her a a shot of epinephrine in her tiny thigh. They handed her stuffed animals to hold and comforted both of us, as the ambulance, with its siren blaring, raced her to the hospital. These men saved her life that day. I will forever be thankful. But, it was this horrifying day that changed everything in our lives forever. 

 

Before this incident, we were aware that my daughter had food allergies. She was diagnosed about a year earlier with an allergy to eggs, milk, peanuts, and tree nuts. But, at the time of her diagnosis, my husband and I were ignorant. We truly believed she would outgrow her allergies. We were not aware that her allergies were so severe and life threatening. I honestly viewed the EpiPen as an unnecessary device that we would probably never use, sort of like an inflatable life jacket on an airplane. We did not allow her to eat her allergens, but did not take other precautions, and it really did not have much of an impact on our lives. However, after her severe reaction that day at the rest stop, our world came crashing down. We were forced to realized that this was something that could kill her at any time, and may not ever just go away. As a mother, this rocked me to my core.  

 

Fear and anxiety took over for the next year, as we attempted to move forward more wisely. I read EVERYTHING about food allergies that I could get my hands on; every study, every Facebook post, every blog post. I took my daughter to several different doctors for exams and second opinions. I learned that even a small amount of food protein, even residue, could cause a reaction. I learned that food labeling laws do not require that companies label for possible cross contact with allergens during packaging or preparation; it is voluntary. Our allergist at the time, point blank told me that I had to just "accept" that this is our life and try our best to avoid her allergens, because there was no treatment options at all for her. I thought, how could we avoid her allergens, when it seemed practically impossible? If food is not properly labeled in the US, and if a small amount could kill her, than how can we eat most food, how can we go out to dinner, and how can she be around other children eating foods at picnics and school, etc.? It all just seemed like playing Russian roulette with my child, and our doctor had no solutions for us. I found myself down a rabbit hole of grief and despair. I felt hopeless. 

 

Through this dark period of our lives, I pushed myself as hard as I could to find a solution to this awful problem on my own. How could I fix this? As her mother, I NEEDED to fix this! I reached out to a mutual friend who helped me join some helpful Facebook support groups and gave me some recipes and practical advice, but I still needed more support and guidance. In desperation, I posted in my local mothers organization asking to meet other parents of children with food allergies. Thank goodness there were several responses! That very first time when I met other moms in person, who understood what we were going through, it was like breathing air after drowning; I felt as if I was coming back to life. I finally felt validated and understood and learned so much about the practical solutions and managing this life day to day. I felt a sliver of hope, and that deep seeded grief and anxiety decreased.

 

My moms' group continued to meet and chat overtime, supporting each other through each challenge. I started to feel as if this life was manageable. From the information I learned and the confidence I gained, I decided I needed to be my daughter's biggest and fiercest advocate. I would make her life as normal as possible and get her the best medical care I could find.  I changed my daughter’s doctor to someone else, who we now adore and trust completely. My daughter met other children with food allergies like her, so she feels less alone.  We have learned about good local restaurants, schools, and countless other important resources in our community that have been life changing. Through our new doctor, my daughter is now in a clinical trial and hopefully will work toward outgrowing one of her allergies with this treatment. Today, we are in a much better place, in terms of, resources, information, and medical care, because of the support from my village of fierce food allergy moms.

 

With the urging of another food allergy mom and friend, I decided to start this blog. My hope is that by sharing our story, other allergy parents will know they are NOT alone and that this lifestyle is doable, and there IS hope. I want to share our day to day struggles and successes, tricks of the trade, recipes, products, and helpful hints, so that we can all work together to improve our children's lives. There is no greater strength than when mothers come together to help their children and one another. No doctor, no article, no expert was more helpful to me than the group of moms living this life day to day.  It truly takes a village to manage food allergies in children, and I am so fortunate to have found mine. I hope, with this blog, I can give back to a community that has been so kind to me and my family.

 

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