Friday Food For Thought: I can’t let go of the recent survey result that states 70% of parents think they can use their child’s past allergic reactions to predict how severe future reactions may be. When I read this, I held my breath (which I really hate when I do that). It scared me as I immediately thought about the tragedies in which parents explained that previous reactions weren’t as severe. I also thought about parents I meet at school explaining to me that they do not carry epinephrine since they KNOW their child will only have a mild reaction. Unfortunately, there are no food allergy and anaphylaxis magic balls. Earlier this week I wrote about Mylan Speciality’s new Ready2Go program and educational video draft in my post, “Epi: Get Drafted by Ready2Go and Be on Screen”. Part of the inspiration for the program Mylan Speciality, the makers of the EpiPen®, emerged from a recent survey they conducted. I asked Mylan Speciality to share more of the survey results with me. What I learned is that our own food allergy and anaphylaxis community have a long way to go!
Hightlights from the recent Mylan (EpiPen®) survey:
Special note: thank you Mylan for allowing me to share the information below. Please note that I was not asked by Mylan to share these results or say anything positive, I requested them. Also, please visit the EpiPen® website for detailed information about proper usage, education information and indications.
· Half of parents (50%; n=256) are concerned that they would not know what to do if their child experienced anaphylaxis.
Being prepared for anaphylaxis means avoiding your allergic triggers, recognizing the signs and symptoms of anaphylaxis and being ready to administer your EpiPen® (epinephrine) Auto-Injector and seek emergency medical care if it occurs.
· One in three patients surveyed feel as though they are prepared to manage anaphylaxis should they experience it.
· More than half (58%; n=296) of the parents expressed that they are not at all or somewhat knowledgeable about anaphylaxis and 76% (n=390) feel that other adults are not at all or somewhat knowledgeable about anaphylaxis.
· Seven in 10 (70%; n=356) patients feel they are somewhat or not at all knowledgeable about anaphylaxis in general, and 86% (n=436) feel others are not knowledgeable.
· Seventy percent of parents (n=359) think they can use their child’s past allergic reactions to predict how severe future reactions may be.
The fact is that anaphylaxis is unpredictable, and future reactions may be different from those that happened before.
· About half (52%; n=265) of parents reported that the first thing they would do would be to administer a prescribed epinephrine auto injector if they knew their child was experiencing anaphylaxis. Twenty four percent (n=122) reported they would seek immediate medical care first. The most common reason cited (25%; n=128) for not wanting to administer an epinephrine auto-injector was that they don’t want to overreact.
The take away information for me is that we are not as confident as we should be, we question our own abilities and we still have fear about over reacting. I paused for a moment and asked myself about these topics and how would I respond. I have to say that I do have a touch of fear of over reaction and have visions of giving my daughter her Epipen® only to find out that she it was a false alarm. I constantly remind myself that if I have to ask the question, “should I administer”, then I should.
One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
I think a lot of our fear of overreacting comes from the medical community, ie, paramedics, ER doctors, etc not all being on the same page. Also, we are constantly on the defense with the public in general and schools/daycares in particular. We went to an Epi-first protocol with my oldest, who has asthma as well, because wheezing can often be a first symptom of anaphylaxis. Even in my own head, though I know better, I still rank my kids allergens in order of severity of previous reactions and avoid the ones I know they have had major issues with, for my oldest its peanuts, walnuts, and other tree nuts, and, for my youngest, it’s wheat and barley… but between the two boys they have nearly 20 allergens. I think it a struggle to balance medically necessary with sanity, and, in some ways, a form of denial…
Excellent points Rachel, we don’t have a straight forward consensus within our own medical community. We switched to the Epinephrine first protocol too! Wow–20 allergens between two kids? My son, thankfully, has outgrown several allergens, but we only have peanut, tree nut, dairy, sesame and poppy seeds to contend with between the two kids.
I bet you have you dinner time wired. Fear really is tough one as denial is often the easy place to live.
Thanks for adding to the conversation.