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Answering Questions About Epinephrine While Mourning the Loss of Joseph DeNicola

I’ve shed many tears this week while reading the updates of Joseph DeNicola’s story.  The entire food allergy community is mourning the loss of a boy that most of us never knew, but many of us know all too well.

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As a food allergy support group leader, I hesitated to share the information with my group.  Without many details on the cause or treatments offered, what could I say to invite prayers and sympathy while at the same time keep fears and anxiety levels at a minimum?  Would it be appropriate to tell my children?  What would I say?

When I felt the timing was right, I did share the best information I had with my support group and when I felt like I could speak without breaking down myself I told my 8 year-old (his little brother has the allergies) about what had happened.  My 8 year-old said it perfectly when he responded without hesitation: “Wow.  More people need to know about epinephrine and how and when to use it”.

So I took that moment to review with my son our own family’s emergency action plan, how to recognize the signs of anaphylaxis and the importance of not hesitating to use epinephrine.  While we don’t know for sure what the exact course of events was for young Joseph on Halloween night, we do know that his father did the best he could with the resources he had.  That he fought to save his son’s life the best way he knew how, just like any food allergy parent would.

Still, many are asking, “But he used EpiPens… why didn’t they work?” To that question we don’t know the answer, but here’s what we do know about epinephrine:

  1. Epinephrine is the first-line treatment for anaphylaxis, which usually does not result in anaphylactic shock.
  2. Epinephrine should be given at the first signs of anaphylaxis or when a known allergen has been ingested, even if no symptoms of anaphylaxis are present.  Do not wait until symptoms become too serious.
  3. When giving epinephrine every minute counts.  Be sure your child has his or her auto injectors easily accessible at all times.
  4. Epinephrine can loose it’s efficacy over time.  Always check expiration dates and be sure to keep your prescriptions current.  Discount coupons are available for all brands of auto-injector devices.
  5. Epinephrine can lose it’s efficacy if not kept at a moderate temperature.  Never leave your auto injectors to bake in a hot car or store them in the fridge.
  6. If your child has both asthma and food allergies, learn to recognize the differences and talk to your allergist about your child’s emergency care plan.

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While we can’t bring Joseph back, we can take the time to unite, re-educate and prepare ourselves to prevent this type of tragedy in the future.

No Nuts Moms Support Group member, Cat Lopez is calling all members of the food allergy community to unite by wearing the color teal in honor of Joseph on the day of his funeral services (a Catholic Mass): Monday, November 10, 2014.  In addition to wearing teal, my family will be writing notes to Joey and releasing them into the heavens attached to gold and teal helium-filled balloons. Others will be lighting candles or changing their social media profile pictures for the day.  We invite all to join us in any way you feel appropriate.

In an effort to unite in raising awareness, please use the hashtag #TealforJoey when sharing your pictures or posting condolences on social media.

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Tiffany Rogers

Tiffany is the mother of a child with multiple severe food allergies, wife of a husband with food allergy sensitivities, and manages a few allergies of her own. As Founder of Allergy Cookie, her goal is to provide you with information to simplify living with multiple food allergies and celebrate life in the process. Tiffany has served as a local Chair for the FARE Walk for Food Allergy, Community Events Director and General Board Member for the Utah Food Allergy Network, and Support Group Leader for NNMG Food Allergic Families of Utah. In addition to blogging and publishing books about living with food allergies, Tiffany shares an empowering message as a public speaker at conferences supporting the newly diagnosed and others facing challenges in the kitchen. Tiffany's latest project is the newly formed Chef Free Club, a plant-based, gluten-free and allergy friendly cooking club for kids! Connect with Tiffany via Linked In!