The diagnosis

I am often asked how we found out Benjamin had a peanut allergy.  Shortly after Benjamin turned one, I took him to the pediatrician for his routine one year old visit. We chatted about all the routine one year old milestones.  I asked her at that time how I should go about adding new foods to his diet.  She told me to add whatever I wanted to add, but to only do one new food every couple of days.

So, I started adding in new foods.  We gave him cantaloupe. He loved it.  I waited a couple of days and gave him a bite of my peanut butter sandwich.  He ate it. He looked a little pale to me but nothing else seemed wrong. So, the next day, I gave him another bite of peanut butter sandwich. The reaction was immediate.  He went very red in his face, then he went very, very pale.  Next, huge hives broke out on his neck and around his mouth and continued down his chest. I didn’t wait for more. I was home alone and terrified by the look on my baby’s face.

I ran to cabinet and gave him Benadryl.  I called my doctor. She instructed me to come directly to her office unless I thought he wasn’t breathing and then to do directly to the ER.  It was the worst drive of my life.

I did not know symptoms of anaphylaxis at the time. I did not know the word anaphylaxis existed. I did not know to go directly to the ER and fast. I did not know Benadryl was not an effective treatment for anaphylaxis. I had never seen an Epi pen.

My doctor treated Benjamin in her office. We stayed at her office a long time. She impressed on me that day over and over and over again to always state that Benjamin has a life-threatening allergy to peanuts. She told me to never leave him without telling people he has a life-threatening allergy to peanuts. She made me promise to never write on any form he has a peanut allergy. I had to write he has a “life-threatening allergy to peanuts.”  I left with an Epi Junior and had practiced how to use it. I left with a sheet of paper listing CATEGORIES of food he could never eat. It started like this:  High Risk Food–bakeries, ice cream shops, candy, any ethnic food. It went on and on. I had a crash course in reading labels. I was told to be careful about him ever eating a food that declared natural flavoring as an ingredient.  She told me to be careful about being around cooked nuts since that could trigger an allergic reaction. This was 2000.  She told me that commercially produced peanut oil was fine for Benjamin to eat. He could never, ever eat cold-pressed peanut oil and to ask at every place what kind of oil they used.  The information about peanut oil turned out to be incorrect for Benjamin. But, we were given the best information at that time.

I begged for a safe food list. She told me there would never, ever be a “safe” food list. Ever. She told me that companies change how they manufacture food and peanut proteins were sticky and often picked up by food not containing nuts in the ingredients through the process of food production. She told me this was called cross-contamination. She told me to never let Benjamin eat a plain M&M. Ever. She told me to be careful at buffets, church pot lucks, restaurants. She told me to join the Food  Allergy and Anaphylaxis Network (FAAN).

I left her office. I was overwhelmed.  I was terrified. I shared all of this with Joel. We cried for three days. I discovered in my circle of close friends that there wasn’t a lot of understanding or sympathy or help. This was shaping up to be a private journey (or at that time a nightmare.)

We prayed. We took a deep breath. We joined FAAN. We decided that there was a lot of wisdom to living one day at a time. Twelve years down the road I am deeply grateful that my pediatrician understood the gravity of a food allergy. Twelve years down the road I still pray. We still live one day at time.

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4 Comments

  1. Benjamin

     /  April 17, 2012

    I love your post Mom. It was great

    Reply
  2. Hi Jennifer:
    I’m the Angel Service Dogs guardian who raised and obedience-trained Trace-E; I brought her home when she was eight weeks old and she lived with my family in Portland, Ore., for more than six months. She’s a FANTASTIC dog, and we all still miss her very much, but it helps tremendously to know that she’s the dog that will help keep Benjamin safe. BTW, I’ve been chronicling the exploits of my current pup-in-training at my blog (http://thetwentythousanddollardog.com/), ongoing research for a book about peanut allergy (I’m a magazine journalist by profession), and was wondering if I might interview you and your family for the blog, and potentially, the book. If you’d like to connect, you can message me via Facebook or e-mail. And/or I could sit down with you guys when you have a free moment in Colorado Springs in June; I’m planning on attending the Angel Service Dogs graduation!

    Ted Katauskas

    Reply
  3. crosstimbersministry

     /  May 6, 2012

    Jennifer, saw Joel’s fb status about the iron man. When I came to your blog, I realized I knew nothing about this. Reading your post above was incredibly touching. What a journey! You sound like an amazing mom.

    Our oldest son has gluten intolerance, so I can faintly relate to struggling with all the food labels and choices. However, it has never been life threatening! It is so life altering, though.

    Amazing the way the Lord has led you to Trac-E.

    I am praying for you all right now.

    Rutha Ebeling

    Reply
  1. “Safe” foods that aren’t safe « Benjamin's BlogDog

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