Our son was diagnosed in 1999 with allergies to eggs and peanuts, as well as all tree nuts, shrimp, soy, and green peas.
There was a lot of 'gray' surrounding the management of food allergies at the time. You didn't have food allergy information or food allergy friends {virtually} at your fingertips like today. Google got started in 1998. Facebook didn't launch until 2004, though various other social media platforms had bubbled up as early as 1997.
As a member of the food allergy mom's 'club' you relied on your local allergist (who might or might not have been close to the research pipeline), joined FAAN (the Food Allergy & Anaphylaxis Network, est. 1991), and tried your hardest to avoid the allergens and keep your child safe.
Our family did not follow our allergist’s advice about what to do when our son reacted to something he ate. We:
...were dearly afraid of giving him the shot.
...chose to give him Benadryl first, then observe for a short while.
...planned to use his auto-injector (which we did carry everywhere), but only if symptoms 'escalated'.
...hoped to avoid a 'false alarm’ ambulance ride and ER visit.
In retrospect, this was wrong, but then again, hindsight is 20:20.
For our son, it was always the same reaction when he ate something with egg or peanut in it — coughing, violent ejection of the offending food within an hour, face a bit pale, then done. We’d observe for a short while, then declare victory. Allergic reaction managed. Crisis over.
Not so fast...
It's really hard for me to write the following, but I am sharing with the hope that you will learn from our mistake(s). An incident involving apple pie from a grocery bake shop with a food label that failed to disclose egg wash on the crust still haunts me.
We had put our son to bed after the pie, only to hear his little brother (who shared the bedroom) shouting for us. Our son with food allergies had thrown up. Violently. Everywhere. I mentally took stock, "He seems OK. Nothing we haven't experienced before. What a mess. Was it the pie? (Note to self: call the bake shop first thing in the morning.)"
After we cleaned up (no small feat with a bunk bed and walls covered) we put both boys back to bed and went to bed ourselves:
Not administering epinephrine.
Not knowing anything about biphasic anaphylactic reactions.
Not knowing allergic reactions don't always look the same or progress the same.
Not realizing how quickly symptoms could progress if anaphylaxis gathers steam.
Not realizing we should have at least observed him closely for hours (not minutes).
It's crystal clear to us today that guardian angels worked overtime on our behalf that night to keep our son safe through the night while we slept. It could so easily and tragically have gone another way.
Here's what we'd do differently today...
1. Know what all the symptoms of anaphylaxis look like, never forgetting that they can present differently.
2. Know & follow our emergency action/care plan to the letter.
3. Epi first. Epi fast.
Never hesitate.
Never second guess the need to inject.
Ignore the voice in our head that counsels 'wait and see'.
4. Get to an ER asap.
5. Never leave the ER without extra doses of epinephrine.
6. Monitor closely for any recurring reaction—over {many} hours.
You don't often get do-overs in life, so I am paying it forward with this post, hoping you will learn from our mistake(s), hoping to help you manage an allergic reaction correctly, safely, when you have to.
About the Author: Gayle Rigione is CEO and Co-founder of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and spent the night in the ER. These experiences inspire her to create tools for people with food allergies that make life safer, easier. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
Photo Credit: The Rigione Family