PATIENT VOICES
Learning to Live with My Son's Anaphylaxis

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Traveling with a toddler can be extremely nerve-wracking – especially when it’s your first child. My experience was no different.

While dining at a hotel restaurant, the waitress handed my two-year-old a sippy cup to go with the breakfast I had packed him. After he took his first sip, he started moving his tongue in a funny way and crying. I immediately knew what was wrong and kicked myself for not checking: the sippy cup was full of milk – not water. My son, Joseph, was having a severe allergic reaction.

Without hesitation, I pulled down his jeans and pushed the epinephrine into his thigh while my husband ran to get the car. My hands were shaking. Joseph vomited. My brown-eyed baby boy was struggling for breath and his red face turned pale in the back seat on the way to the hospital. I felt like his life was leaving him as I helplessly sat and watched it happen.  

When we got to the ER, he was quickly surrounded by people. They put him on oxygen and struggled to get the IV for epinephrine into Joseph. A doctor, more than likely sensing my distress, turned to me and said, “I have a kid at home myself, and I’m going to do all I can to help yours.”   

Luckily, Joseph was fine and we were able to take him home the next day. I couldn’t stop kicking myself for not looking in that sippy cup before he drank out of it.

We knew Joseph had the potential for anaphylaxis. When he was nine months old, his nose began running and he broke out in hives after eating his first bite of yogurt. At first, my husband and I had no idea what was going on since no one in our families had allergies, much less a severe reaction to food. After testing, we found out Joseph was allergic to peanuts, tree nuts, milk and egg. Later, that list expanded to include soy, wheat, sesame, mustard and even strawberries, watermelon and cantaloupe. He’s also been hospitalized several times from severe asthma attacks. 

There have been certain challenges. People make negative comments about my decision to homeschool Joseph, and they often assume I’m just being a neurotic mother. But we choose to focus on the positive and have found ways to fight the stigma and keep him safe.

The ER doctor’s words have stuck with me over the years. Throughout our journey with Joseph’s condition, there have been a lot of empathetic people, like that doctor, who have gone above and beyond to make sure Joseph is not only safe, but also doesn’t feel left out.

Everyone takes precautions.

Joseph’s cousin is trained to use the epinephrine just in case something happens while they’re playing. Joseph also wears a medical identification bracelet and always carries two epinephrine auto-injectors. In our house, we only cook foods that Joseph can eat (aside from my occasional non-gluten-free pasta indulgence). When he was little, I would make him his own cupcakes to have at birthday parties when the other kids had the birthday child’s featured dessert. We stuck to applesauce, grilled chicken and steamed veggies for almost all of his meals. Luckily, the selection of foods available that he can eat has grown tremendously at grocery stores with more allergy-sensitive options, and so has my recipe repertoire. Still, any time we introduce a new food or product, it’s a risk.

The anxiety is still there for all of us. But plenty of preparation, vigilance, communication and creativity help Joseph enjoy many experiences safely while navigating food allergies.

Joseph, now 12, sees a therapist to help with any issue he needs to talk through. His sense of humor helps, too.

As a mother of a child with anaphylaxis, I never stop worrying. At each stage in life there will be new challenges for Joseph – puberty, dating, college. But we focus on the positive – what Joseph can have and do. We take advantage of support groups and participate in the local Food Allergy Research and Education (FARE) Walk for Food Allergy. And I share experiences and recipes with an online group.

We talk a lot about the future – Joseph wants to be an animator, or create video games or program websites. He also dreams about being the writer who writes the next Great American Novel.  

I think of that first episode in the ER when Joseph was just a toddler as a learning experience. I’ll never forget it, but I look at him now and I see a strong, vibrant, funny young man with his whole life ahead of him.

Wendy Mondello is the mother of two children and lives in Pawling, New York with her husband, Gary. In her blog, http://tasteofallergyfreeliving.blogspot.com/ , she writes about her experiences with her son Joseph’s anaphylaxis.    

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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.
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