Have any of you seen the 1990 monster comedy “Tremors” starring Kevin Bacon and Reba McEntire? If you have not seen it, I highly suggest adding it to your watch list!
There’s comedy, romance, cheesy scares, and just the right amount of character underdevelopment.
To claim that I LOVE this movie series is an understatement.
Needless to say, it was a big hit in its day and there were subsequent sequels. My absolute favorite character is Burt Gummer, a glorified elderly version of Rambo.
In the second movie installment, Burt is pinned down by a bunch of mutated monsters (he didn’t know about these particular vicious critters) and he miraculously survives.
When Burt arrives back at the monster hunting base, he angrily vents to his teammates:
“I feel I was denied critical, need-to-know information.”-Burt Gummer (Tremors II: Aftershocks)
Well, like poor Mr. Gummer, I have often had that same exact thought when it comes to our family’s medical journey with food allergies.
My daughter was diagnosed with a peanut allergy before she was even a year old. At the time of diagnosis, I had no idea what was happening or really what we needed to do.
We were prescribed 2 EpiPens and told to avoid peanuts.
That was literally it.
It was the only advice from our first allergist that we received besides explaining the skin and blood work testing results. Everything else I learned on my own or from other food allergy moms on my Facebook groups.
I learned so many things about the EpiPens that I wish my allergist would have just told me in our first appointment!
It really felt like I was denied critical, need-to-know information.
Here are 6 things Lauren and I wished somoene would have told us about Epi Pens in the beginning.
1. Always Keep 2 Together
When our 2 EpiPens arrived, my husband and I thought that we could each keep one. In short, we assumed one of us would always be with our daughter and that we were covering all our bases.
Lauren and her husband thought this too.
The 2 EpiPens should NEVER be separated. This is not a “one for home, one for school” situation.
Why? Because if someone experiences a severe allergic reaction, one dose of epinephrine may not be enough to treat life-threatening symptoms.
If symptoms don’t improve after the first dose, a second dose can be administered typically 5-15 minutes after the first dose.
Annals of Allergy, Asthma and Immunology did a study on allergic reactions and found that 11% of people needed to use 2 doses of epinephrine. You can read the study HERE.
Although extremely rare, it is also possible for an injector device to malfunction. In the event where the injector will not work, having a second is extremely important.
Basically, you ALWAYS want two with you.
We now keep each set of EpiPens in their own personal case. Check out Amazon for EpiPen carrier cases. We personally love AllerMates!
2. Keep Them at Room Temperature
Epinephrine is susceptible to damage when left in extreme temperature changes over an extended period of time. Therefore, it is very important that they always be kept at room temperature (68-77 degrees Fahrenheit).
Well, no one told us that when we first got them. This would have been nice to know.
I’m sure it was written somewhere on the prescription or on the packaging, but we were so overwhelmed with figuring everything out that this particular detail was overlooked.
That is why we now carry the EpiPens inside of insulated carry cases. Most cases are insulated to protect EpiPens from both cold and hot weather temperatures.
This is another reason we really love the AllerMates brand. You can check out their Amazon store HERE (this is not an affiliate link, we just love them).
Another fantastic brand is FRIO. Originally, their product was intended to keep insulin cool, but many allergy families use it to keep EpiPens at room temperature if you are out in the hot summer sun for hours.
Check out their Amazon store HERE (also not an affiliate link).
Now, maybe you’re freaking out because the EpiPens were exposed to extreme temperatures. For example, you accidentally left them in the car in the summer heat.
We’ve been there.
Our best advice to you is to call your child’s allergist and let them know what happened. You could also talk with your local pharmacist and/or call your child’s pediatrician.
Depending on the circumstances, you may receive the advise to replace the injectors.
Epinephrine is a life-saving medication and it’s just not worth the risk.
3. There are Different Injectors
When our EpiPens arrived in the mail, my husband and I sat down to learn about them. I was so nervous.
Honestly, I was a wreck even thinking about sticking a needle into my 11-month-old daughter.
We didn’t know this at the time, but there are many online resources out there to help you feel more comfortable using the EpiPens.
First, what type of injector do you have? I didn’t realize there was more than one kind. We are using the term “EpiPen” to refer to epinephrine, but that is actually the brand of injector. Lauren’s family carries “Auvi-Q” injectors.
Here is a guide from FAACT to the different epinephrine injectors available in the US. This guide includes helpful training videos on how to use each device.
Learn about your device and how to use it. There should be a trainer injector included in your prescription. Use the trainer to practice and get familiar with the device.
An emergency situation with your little one is not when you want to figure out how to get comfortable with this.
For the same reasons that we do fire drills, CPR training, etc., you want your response to be second nature in an emergency. This helps you move through the panic with the confidence that you know what to do. This is why it’s important to practice.
4. They Expire Yearly
A few months into having the EpiPens, my husband noticed that they have an expiration date. We really thought that we carried the EpiPens around for an indefinite amount of time until we had an emergency.
Yeah, we felt really dumb that we didn’t know about the expiration.
EpiPens expire after a year. It is really important to check your expiration date when you get new ones. Make sure they are good for a year. We’ve had moms share that when they got new ones, they expired in only a few months.
If that happens, call the company and let them know. You should have epinephrine that is good for 1 full year.
Here are a few ways to help remember to update EpiPen prescriptions:
- Set a reminder on a phone 4 weeks prior to expiration date
- Write it down on a yearly calendar 4 weeks prior to expiration date
- Keep a medical binder of information and write the expiration date on the front page
- Confirm when your Epis expire after a allergy or doctors appointment
Another new resource that I am currently looking into is Epireminder. I have not personally used this service, but am in the process of signing up.
I LOVE that it was created by a fellow food allergy momma. Check them out on Instagram @epireminder or on their website HERE.
What to do with expired EpiPens.
A common question we see is what to do with expired EpiPens.
Check with your allergist! Often, they will take them for you (ours does). You could also ask your pharmacist or pediatrician.
5. When To Actually Use It
Hey everyone, Lauren here. I’m jumping in on the next 2 points to share my experience as well.
When I received my son’s first set of EpiPens, I was told to use them in the event of a severe allergic reaction and that it can be life-threatening if I don’t use them. I was a brand new mom and completely freaked out.
I just remember staring at these EpiPens, wondering how in the world I was going to manage this.
The fear for my infant son was overwhelming.
The needles were intimidating. The worry of using it incorrectly was frightening.
What helped me to gain my confidence was to learn the signs of an allergic reaction. Most people associate anaphylaxis with difficulty breathing and therefore think that’s only when you administer epinephrine.
There are many more signs of anaphylaxis than difficulty breathing. FARE is the trusted source of information on food allergies and they have a wonderful Emergency Care Plan which spells out the symptoms to look for and when to administer epinephrine.
You will notice on the chart that symptoms range from the obvious difficulty breathing to swelling, vomiting, sneezing, and more. You also want to look for if there is 1 system reacting severely or if there are 2 systems reacting even if they are mild.
I didn’t know this as a new food allergy mom.
This chart has been so helpful and I actually print it and leave it with caregivers so that everyone is on the same page on what to do in the event of an emergency.
I also want to say this. In many food allergy mom support groups, I see so many moms posting about whether or not they should administer epinephrine.
Here’s the thing. In the event of an emergency, time is of the essence!
Delaying epinephrine when it’s needed is when things can start to get really dangerous.
We have a family rule that we tell those who are caring for our kids, if you are following the Emergency Care Plan and are in doubt about whether to epi, you epi.
We will NEVER be mad about this. Because not administering epinephrine fast enough is how things get life-threatening.
When in doubt, administer the epinephrine.
6. Your Child Needs to Be Monitored at the Hospital After Administering Epinephrine
I definitely didn’t know this at first.
Per the FARE Emergency Care Plan we discussed above, when you administer epinephrine, you need to call 9-1-1, request an ambulance with epinephrine, and go to the hospital for monitoring.
Sometimes people feel fine after receiving epinephrine.
This. Does. Not. Matter.
This. Does. Not. Matter.
DO NOT skip the ER visit because your child appears to feel fine. Sometimes even the EMT’s will suggest skipping the ER visit.
The amount of serious misinformation about food allergies is staggering to me and in full honesty, one of the things on my list of things to change is more knowledge of anaphylactic care and training in our urgent care and emergency services.
It’s SO important to go to the hospital after experiencing anaphylaxis and receiving epinephrine.
The doctor will examine the patient and the hospital will typically monitor for at least 4 hours. They are checking vitals, monitoring symptoms, and also watching for a “rebound” reaction.
Unfortunately, “biphasic” anaphylactic reactions exist and what happens is after the first episodes’ symptoms go away, but then they come back.
Yes. This is real. And it sucks.
This is why it is crucial to go to the hospital. Do not skip this.
Thank you for coming to my Ted Talk.
So there it is…
The 6 things we didn’t know about EpiPens.
Lauren and I both wish that we had more detailed information about EpiPens when our children were first diagnosed. We’ve heard other food allergy moms voice the same sentiment.
It feels like there are hundreds of things to remember about food allergies and how to manage them while navigating daily life activities safely. So we know that this information can be a lot to soak in.
We see and hear you. You are not alone!
We hope that this blog post proves helpful to you and your family as you walk this journey.
– Katie & Lauren
What to Read Next: Quick Guide to Talk About Food Allergies