Refill Those Epinephrine Auto-Injectors!

By Kelley Lindberg

I heard a surprising and disturbing statistic 2 weeks ago when I was at the Mylan Specialty Allergy Bloggers Summit:

Only 5% of allergy patients are still refilling their prescriptions for EpiPens three years after their last reaction.

That’s scary. The speculation is that the farther you get from your last reaction, the less likely you are to think about it, so the less likely you are to take it seriously.

Really? To me, that’s kind of like someone who drives for three years without a traffic accident, so they stop wearing a seatbelt. Then maybe they stop using their turn signals. Then they stop braking at stoplights. I mean, hey – they’ve been just fine for three years, so obviously all those traffic rules and safety precautions were unnecessary, right?

If you’re vigilant for three years and nothing bad happens, does that mean the danger no longer exists? Or that your vigilance kept you safe?

That’s a no-brainer, right? It usually means that your vigilance kept you safe.

Unfortunately, it’s when you stop being vigilante that you discover just how important your vigilance was. And then it’s too late to get it back.

If you haven’t had an allergic reaction in three years, fantastic! That’s great, and it means you’ve been careful – and probably lucky, too. It doesn’t necessarily mean your allergy has vanished, or that anaphylaxis has suddenly disappeared from the planet. (Wouldn’t that be great, though?) It just means that you’ve managed to navigate your way through the minefield of a food-filled world safely for three years. It doesn’t mean that you won’t step on that landmine tomorrow. Or next month. Or three more years from now.

Even if you’re crazy-careful, accidents still happen. You sit down at a table with a peanut-butter smear you didn’t notice. Your favorite brand of cookie suddenly contains egg for the first time EVER, and it was the one time you didn’t think to read the ingredients. The kid at the next table drops his lunch tray and splatters your milk-allergic child with milk. The pasta dish you’ve ordered at your favorite restaurant for years suddenly contains sliced almonds because the chef got an adventurous urge to jazz things up a bit.

And those accidents are why we need to carry our epinephrine auto-injectors every day, everywhere. Yes, be careful. Yes, read labels. Yes, avoid eating risky foods. But don’t assume that will be enough. You can control your own actions, but you can’t control the people around you, and they cause accidents, too. In fact, I’d be willing to bet that at least half of all food allergy reactions are probably caused by the actions of other people (on airplanes, in restaurants, in school cafeterias, at soccer games, etc.).

So refill and carry those epinephrine auto-injectors. Not because you’re careless. But because you’re careful.

To help make it easier to remember to refill that prescription, Mylan has a nifty app for smartphones that helps you track your EpiPens and get reminders when they’re expiring. Called “My EpiPlan,” the app can also show a how-to training video, display tips and articles about managing allergies, and store your allergy profile to show medical professionals. The My EpiPlan app is available on iTunes and Google Play.

Don’t have time to refill your prescription? Remember, it takes less time to get a refill than it does to go to the ER when you’re in anaphylactic shock. I’m just sayin’.

And right now, you can still get your EpiPens for $0 co-pay (up to $100) by going to the EpiPen website, printing the coupon, and taking it to your pharmacy with a valid prescription. Click here for more info: EpiPen® $0 Co-Pay Offer. 

[I disclose in any communication made by me about EpiPen® (epinephrine) Auto-Injector and/or the Mylan Spcialty Blogger Summit that such communication is at my own discretion and based on my own opinion. I also disclose that my travel expenses were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.]

Real-Life Hunger Games

by Kelley Lindberg


Along with a few million of my closest friends, I went to see the movie The Hunger Games this weekend. For those of you who may have been living in a hut on deserted island lately, the story is how 24 teenagers from 12 once-rebellious but now subservient and poverty-stricken Districts must fight each other to the death until only one remains – all for the entertainment of the wealthy citizens who won the long-ago war.

One concept that struck me as odd in the book and the movie is that one or two of the Districts secretly train their youth for years, in the event that one of them is someday called upon (or volunteers) to fight in the Hunger Games. The winner of the games wins extra food for their District for a year, so each District has a vested interest in seeing their youth win.

But most of the Districts don’t do that kind of training. So the heroine and hero, Katniss and Peeta, and the rest of the contestants have to spend a few days in intense crash-courses in survival and weapons skills. Because Katniss is smart, used to hunt for food, and has a strong survival instinct, she carries the day. But I keep wondering – why didn’t her District teach their children more about such skills while they were growing up? Sure, it’s technically illegal, but couldn’t they have found some way to impart at least some fundamental skills, like the richer Districts do? If Katniss and other children like her were better trained in how to protect themselves, how to find safe food, and how to survive in a hostile environment, maybe their survival would have felt less like luck, and more like a plan.

Then it dawned on me that I was pondering a great analogy for food allergies, and kids who may feel sometimes like they’re in their own real-life Hunger Games, only the enemy is food allergies instead of other kids.

As parents, we have a responsibility to train our children so that they have the best possible chance of surviving on their own someday. And yet I have met parents who seem very lax and unconcerned about their food-allergic children. I’ve heard of parents who think trips to the ER for a food allergy reaction are just a normal part of life, and that avoiding them isn’t worth the hassle of eliminating food allergens from their meals. How are their children growing up? Do they feel like their own needs aren’t important? And when these kids go out on their own, will they have any idea how to shop for safe foods, read an ingredients label, or keep themselves safe in social situations? Hopefully those kids will be lucky and eventually learn on their own, but I have a hard time trusting to luck when knowledge seems pretty effective.

The fact that you’re reading a food allergy blog like this means that you’re already concerned enough about food allergies that you’re doing your own research. You’re learning about food allergies and how to minimize their negative impacts on your life or the life of your children. If your child is food-allergic, you’re already training them in how to protect themselves, how to find safe food, and how to survive in a sometimes hostile environment. Maybe you’re even sharing your knowledge with other families who are just discovering their food allergies.

In other words, those of us in this online food allergy community are all doing whatever we can to raise our kids to be competent, capable, and brave Katnisses and Peetas. And while, thank goodness, they don’t have to compete with other kids for survival, they do have to understand how to navigate through a dangerous environment when they grow up. As parents, we have to feel pretty good that we’re giving them the best training we can from an early age.

May the odds be ever in their favor.

Accidents Happen

Last night, my son’s best friend accidentally ate some hidden cheese, and he ended up at the doctor’s office at 10:00 pm with a strong food allergic reaction. It was scary, but all things considered, he was fortunate – it was not as bad as it might have been. His face and neck puffed up and he turned crimson from his head to his toes (looking for all the world like he’d gotten a bad sunburn), but his breathing stayed normal, his lungs stayed clear, and his oxygen level remained great.

He didn’t need to be injected with an EpiPen, but the doctor did prescribe an oral steroid for the next few days, and his mom is keeping him on Benadryl for 24 hours.

He woke up this morning back to his normal color, and with only a faint shadow of puffiness beneath his eyes. We’re all breathing easier this morning.

Now, in the clear light of day, after a good night’s sleep, his parents are going through this episode with an eye towards learning from it.

One of the main lessons is simply this: accidents happen. No matter how vigilant, informed, careful, or prepared you are, it’s still possible to let a mistake slip though. Whether it’s grabbing the wrong food because the package labels are similar, or administering the wrong bottle of medicine because it’s in the same location and you’re panicking, or forgetting to check on the ingredients before your kid reaches for a treat, accidents happen.

It’s easy in a situation like this to let guilt and blame flare up. You’re scared, you’re upset, you’re angry. You lash out. In reality, however, guilt and blame always just make things worse, right when the kid needs to hear supportive, positive, loving words instead. So you have to give yourself permission to be human, and give yourself enough room to get past the guilt and move directly to productive actions that will solve the problem at hand.

Fortunately, this family didn’t go down the blame/guilt route. They recognized that there were enough crazy coincidences all happening at once that no one was to blame – it was truly a series of accidents that no one could have predicted. So they’re able to support each other at a time when that’s what they all need. No one is angry; no one is harboring ill feelings towards each other. Everyone is able to feel relief and love instead, which is the way it should be.

This is the first serious reaction this child has had in nearly ten years. That’s because his parents are the most careful people around. They do everything right. They do everything with an eye towards safety. So they’re both agonizing over this experience. But really, it’s remarkable that they’ve only had one mishap of this size in ten years – that says a lot in their favor, since avoiding milk, egg, and nuts in today’s food-oriented society is a constant battle.

The good news is, they were able to deal with the situation quickly, identify exactly what went wrong, and get him to the doctor for treatment. They couldn’t have done that if they weren’t prepared, so they should feel really good about their abilities to rally in a crisis.

And the boy has now had a bad reaction that he can actually remember (most of his other reactions were when he was very small, so it might be harder for him to remember), so when the next time comes, he’ll know a little more about what to look for.

So rather than beating themselves up about this, the family is looking at the lessons they’ve been able to learn, and they’re going to be even more vigilant, careful, and prepared next time. Of course, we all hope there will never BE a “next time.” But accidents happen. It’s how you handle them that matters, and being prepared is the biggest part of success.

Preparing for Natural Disasters

We had a little storm this morning. The clouds grew black, the lightning and thunder struck, and the rain fell for about 15 minutes. We even got a bit of pea-sized hail. Now it’s cool (50 degrees), cloudy, and breezy, with a bit more rain just starting to fall. My son’s soccer practice got cancelled, and he and his friend are playing in the basement today instead of out riding their skateboards. So much for a Labor Day last-day-of-summer kind of holiday.

But as Labor Days go, we’re having a MUCH better one than the folks along the coast in Mississippi and Louisiana. Hurricane Gustav is lashing at levees in New Orleans, shredding the cypress trees in Gulfport, and tearing at emotional and physical scars just starting to heal from Katrina three years ago.

It’s hard to imagine living through a natural disaster. At least today, because the sky was low and menacing when I woke up, I felt a small connection to the people in Gustav’s path. When Katrina hit New Orleans three years ago, I stood on my porch and looked out at a beautiful blue-sky day, and tried very hard to understand the devastation going on at that very moment in Louisiana. It seemed impossible that the weather over my head could be so very different from – and indifferent to – what was going on there.

Every time a natural disaster hits somewhere in the world, I think of all those people trying to escape. If they have a few minutes, they throw some scant belongs into a suitcase and hit the road. How do you decide in a few minutes what to take and what to leave behind?

Personally, it takes me at least 12 hours to pack a suitcase for a weekend away. And that’s when it’s a planned holiday, not a mad rush for safety. So years ago, when an earthquake had hit California on another holiday, and I spent the day watching the news reports, I decided to finally do what all the experts recommend – pack an emergency kit. With the TV showing photos of crumpled bridges and buildings, I got out a notepad and began making a list. Then I went to the store and began stocking up on all the things I knew I’d need.

Now, every year I go through our emergency kit and update it. I replenish the food. I swap out old medications for new ones. I take out the clothes my son’s outgrown and put in bigger sizes. I update the phone numbers and financial information that we would need if we found ourselves evacuating on short notice.

One thing I make sure I have is plenty of food that my son can eat, as well as his Benadryl and EpiPens. When I hear about people staying in emergency shelters, I worry about the ones who show up with food allergies. I doubt the shelters are equipped to handle people with food allergies – especially multiple food allergies. Perhaps they are – maybe they have meals set aside for people allergic to gluten, milk, eggs, and nuts. But more likely, they’re making do with whatever they have on hand, and the cross-contamination alone must be a constant threat.

If you have an emergency kit, or if the Gustav hurricane footage is making you think today is the day to put one together, be sure you put safe food, Benadryl, and EpiPens at the top of your list. One emergency at a time is enough.