Wednesday, May 1, 2013

Attention All Food Allergy Friends: Carry Your Epinephrine!

When my daughter was first diagnosed,
we had sticky notes like this all over the house.
When your child (or you!) received a food allergy diagnosis and you discovered a risk for anaphylaxis (potentially life-threatening allergic reaction), one of the first things you probably received was a script for an epinephrine auto-injector. You were likely told that you must carry the auto-injector with you at all times, you filled the prescription and goes on. When you are first absorbing the many changes that food allergies bring, sometimes you can forget to pack the epinephrine. Or maybe you don't think you really need it everywhere, especially if you don't plan to eat.

The simple rule about epinephrine auto-injectors is that we never know when we'll need them. So always carry them! In fact, most allergists recommend carrying at least two at all times for a multitude of what-if reasons.

It's easy to forget these little life-saving doodads when you're rushing around fulfilling your life obligations. But--these things are too important to forget. They will save a life, period. To paraphrase an old TV ad: "Don't leave home without them." And in fact, even if you are at home, have them easily accessible at all times. Pick a cabinet and put a sticker on it or a sticky note--whatever you have to do. Tell everyone who cares for your kids where you either stored or packed the epinephrine. Truly, these small steps can make a difference by saving a life.

Tragic food allergy fatalities usually have one commonality that is heart-breaking: no epinephrine was available for the person suffering the reaction. This is reason enough to turn the car around and head home if you forget it. I've done it so many times and even if I've been late for something I've never regretted making sure I have the epinephrine. As my husband's late grandmother used to say "Better a red face than a broken heart." Amen to that! Carry the darn things.

I know it's a pain to remember to carry epinephrine auto-injectors, so I have some suggestions that worked for me. If some of these seem over the top, they are meant to be. Because, after all, the goal is having the auto-injector available at all times!

Whether you are using the EpiPen(R) or the new Auvi-Q(R) auto-injector, if you don't have them with you, they won't work. My daughter's first allergist held up the auto-injector and said "This is no good if you don't have it with you. Always have it with you." Point taken and I've always remembered that good advice no matter what.

Tricks for remembering/quickly locating your epinephrine auto-injector:

1. Use lots of sticky note reminders (see photo above). Place reminder notes on your front and back doors, the sink, your car dashboard, the kitchen cabinet, the TV screen--anywhere you think will be useful at helping you remember.

2. Wear it: OneSpot Allergy has auto-injector belts for both the EpiPen(R) and Auvi-Q(R). The company Olli Lolli even makes khaki pants that kids can carry it in. Whatever works--do it!

3. Have a special, recognizable case for the auto-injector. My daughter loves her carrying case from Epi-Essentials. If she doesn't have this visual reminder in her bag, then she knows not to leave without it.

4. Get your kids in the habit of remembering their auto-injectors. Practice having your kids bring you the auto-injector before you go somewhere; as they get older, have them carry it. (You carry a backup of course.) I'm so glad I did this; now my daughter is excellent at remembering and usually already has it packed before I ask "Do you have your auto-injector?

5. Practice drills for locating epinephrine. Pretend you need the auto-injector and time how long it takes to find it. It shouldn't take long--only seconds! If it takes too long to locate find a new spot for it.

I hope these tips help! And remember:

What works for you? How do you remind yourself to carry your epinephrine?


Jennifer Buteau said...

Excellent post!!!

I ALWAYS keep 2 epipens in my handbag. I ALWAYS keep my son's epipen belt (I love the carriers from Onespot Allergy.) on the doorknob of the front closer, right near the front door. It's become a habit now for us. Thank goodness!

Ali said...

We have a medication station at home with all emergency meds and asthma and allergy action plans posted on the inside cupboard door.
I've never had a problem carrying my daughter's epis, but carrying the albuterol and spacer has been much more challenging, partly because they are so bulky. They are just as important as the auto-injector for people with asthma and should be carried always too.

Kathleen said...

My daughter, who is six, carries them in a Hello Kitty bag--people who don 't know her think it is cute that she carries a purse! I also keep them in my purse and now that summer will be here, I also keep a set in our pool bag--you just never know!

M.A.Hanley said...

I wish epi pens could be obtained over the counter. people should buy them to have around - you never really know who might have an allergy emergnecy in your house and not be prepared!