This article, “Flipping the Lid on Food Allergies,” posted on the Allergy and Asthma Network, Mothers of Asthmatics website had people talking this weekend. The author starts off by saying her column is controversial. This is what has caught my attention. What is controversial about starting a conversation about where the line should be drawn regarding fears and protocol when managing life threatening food allergies? My perception of this article is that the author is trying to bring up conversation about parents being too fearful and physicians not providing enough data to parents regarding where to draw the line regarding steps to take to be safe. To me, the real topic here is true food allergy risk reduction vs unneccessary fear.
Keeping our food allergic children out of the bubble is the goal
Here’s the deal, unfortunately, life threatening food allergies are not an exact science. There is no clear cut protocol and no 100% precise testing or predictors of allergic reactions. I could line up 25 food allergy families in my town and show you 25 different approaches. My son has severe asthma, which exacerbates a food allergic reaction and puts him at greater risk for anaphylaxis. Therefore, we take less food allergy risks when he is having asthma issues. My friend’s son is airborne allergic to peanut and recently spent the night in a Utah hospital when someone opened up a package of peanuts near him as he was changing planes on his way back to college. I know another child who has no problems with dairy being consumed in certain forms of baked items–but not all baked items. All of these families manage risk based on other existing health conditions, how their child’s food allergies present and by age or maturity of each child they are managing.
I bring a note book when I head to the allergist so I can write down answers and file information received from my physician (the list shown above was downloaded from the Allergic Girl Website coaching link.
I believe the solution to determine the difference between living in fear taking un-necessary measures and taking appropriate risks and steps is to speak to your physician. I can’t help but turn back to the amazing discuss led by Sloane Miller, Food Allergy Coach and founder of Allergic Girl Resources, that I was honored to attend during the Mylan Social Media Summit last month. Sloane shared a story of a young girl afraid to take public transportation for fear of touching a pole that had been contaminated with an allergen. Sloane worked with her in writing a list of questions for her allergist regarding things that she avoided or feared were unsafe. Then Sloane accompanied her to her physician visit to help her feel confident with her new information. At the visit, the doctor clarified what precautions were warranted and which were not valid medical concerns.
Sloane Miller presenting how to Manage Food Allergies with Confidence.
The moral of the story from Sloane was for us, as food allergy self managers or parents, to be prepared on how to speak to our doctors and to always be prepared for an emergency (meaning carry two epinephrine auto-injectors and know how to use them). Lets face it, our doctor’s time with us is limited and learning how to make the most from each appointment is key. Sloane also offers a document, AGR What to Ask Your Physician regarding how to prepare for your visit to the allergist. It is our responsibility as the patient to ask questions and we should walk out of the allergist’s office with enough knowledge to get us started on this food allergy journey! I feel we do need to understand the difference between real fear and risk that can be addressed versus unreal fears.
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!..
What a great take on this! When I talk to schools and families about approaching FA, I try not to tell them what to do. Rather, I share different approaches that have worked for others. The one thing that I agreed with from the original article to which you refer- “a willingness to break free from a cookie-cutter approach”. I love the point that you make when you say, “I could line up 25 food allergy families in my town and show you 25 different approaches.” So true, so true!
Thanks for the comment Sarah. Don’t we all wish that there were cut and dry answers? I think that is what makes it rough for us. Then add on top of it that our disease is invisible! Invisible and no clear cut answer or repetition of management.
That is why I truly am grateful for our food allergy community. There is always someone a few steps of ahead of me who is always willing to share ideas.
Caroline
I believe the controversy is the fact that there are some (not all) children with food allergies that are being raised to believe the unreal fears as fact. It can cause unnecessary anxiety, fear, depression, and emotional pain. I’m sure it started with good intent. However, living with food allergies without the real facts can be emotionally harmful. That is what makes me sad.
Thank you for taking the article one step further. Giving advice to go to the doctor and having a discussion on what is real fear vs. unreal fear is the best thing parents could do for their child and themselves.
Thank you for the great article, Caroline. I really enjoy reading your opinion and admire the way you are able to communicate it to all of us.
Thanks Elizabeth, it really does make me very sad when I meet other families at school that are either too afraid or not taking the disease serious at all. I never realized what a resource Sloane Miller was until I heard her speak. She is very logical and I like that she has a list of what to ask the doctor on line. Impressive.
I really, really enjoy your blog too!!!! I just love our food allergy community!