After Wednesday’s Blog post about Byrant University student Cameron Fitzpatrick’s tragic death from a cookie containing peanut there has been much conversation in our food allergy community regarding the fact that his family did not realize his food allergy could kill. We began exploring the question of how much each of us were told regarding the anaphylaxis element of food allergies when our children were diagnosed. You’ll see part of this conversation if you read some of the comments from Wednesday’s Blog post, “Honor Cameron Fitzpatrick’s Death by Saving a Life”.
Updated 3/15/03: Good Morning America reports in “College Freshman with Peanut Allergy Dies After Eating a Cookie”, his EpiPen®Auto-Injector was in his suitcase and his mother had an expired EpiPen®Auto-Injector in her cabinet, check out the story for more details.
The allergist who first diagnosed my son right after his second birthday explained we would need to go to the hospital and showed us how to use the EpiPen®Auto-Injector if he had a reaction to his long list of allergens. At my son’s swim lesson two days later the nurse who performed the testing recognized me and pulled me aside to explain that my son could die from a cookie. I’ll never forget her words. The splashing, laughter and pool noise came to a screeching halt and all I heard was her voice. Die? Did she just use the “D” word? I am eternally grateful for her warnings. I quickly reorganized my plans for managing this disease.
Photo courtesy of Sloane Miller
The end result was us moving back to the San Fransisco Bay Area from Reno, NV since my husband’s business was still operating from Oakland, CA and it is where we found the allergist who we felt could guide us through this journey. Sloane Miller, a.k.a., Allergic Girl, explained ever so clearly during the Mylan Social Media Summit last January about finding the right board certified allergist! She detailed how communication is everything and everyone has the right to a good relationship with their physician. I agree, my first allergist did a beautiful job of diagnosis but was challenged on the education side and not much of a communicator. I met Dr. Joshua Jacobs during a food allergy lecture and that is when we decided to move back to the Bay Area, for my son to be treated and our family to be guided by this allergist. He was clear, honest and determined to make sure we understood how to manage my son’s allergies and asthma. To this day, we drive 3.5 hours for appointments with Dr. Jacobs as both of my children have grown attached to him and the practice.
I can’t help but to believe that our challenge of allergy and anaphylaxis education begins right at diagnosis. If parents are not receiving honest and clear information, then they are left to their own devices to hopefully find out the reality of what can occur-anaphylaxis. Could it be that doctors are trying to walk that fine line of not scaring a parent to the point of panic or are they trying to be conscious of sharing information in front of a child who is not old enough to fully understand or digest the diagnosis? Is our medical community failing us or are they trying to protect us from placing our children in a bubble? Could parents only be hearing what they want to hear and not truly listening and accepting the diagnosis? My mind keeps going back to Cameron’s family, did they know he could die? Did he know it ? The video below is of Brian Hom who is incredibly brave to explain his painful story of losing his son BJ in hopes of saving the lives of others.