To Epi or Not to Epi? That is the Question.

Last week at our local food allergy support group there was a sales rep presenting the new Auvi-Q epinephrine injector.  I LOVE the idea of a talking injector to walk you through what can be a very scary experience.  I’ve had to inject Nathan once with the Epi-pen and it was pretty scary.  More scary was the dialogue in my head debating whether or not he needed the injection or not.  If I didn’t inject him with the epinephrine, we were gambling big time with his life.  I wasn’t willing to do that.  Here’s what happened.

Let me just say, that even as diligent and cautious as our family is with my son’s food, sometimes it takes more than one of us to read new food labels, especially if we’re tired.  Or, how many of you have Almond Breeze milk sitting next to Rice Dream milk in the fridge and almost grabbed the wrong one?  Their containers are very similar (both blue) and I’ve almost grabbed the wrong one a couple of times.  In our particular situation, he was handed the wrong kind of cheese.  American cheese singles are very similar in color to Rice/vegan cheese singles.  We quickly realized the problem, and he had only taken a few bites.  Still, the hives came on pretty quickly, and so did the adrenaline racing through my body.  This was the first time he actually ATE dairy since his diagnosis.  I panicked. I whipped out the Benadryl and gave him a dose.  I actually had no idea if he was anaphylactic to dairy at this point, but I always assumed he was.  After an eternity (OK, probably just a minute or two) of watching him, the hives were still there and there was slight swelling of his lips.  I think I remember him coughing maybe once, but nothing too crazy.  The Benadryl just didn’t do enough fast enough for my liking, and between that and the slight swelling I did what I had hoped I never had to do.  He never was struggling to breathe, but I sure didn’t want the situation to progress that far.  Out came the Epi-pen and in 15 seconds the whole process was done.  It’s amazing how fast epinephrine works.  It’s amazing how fast I didn’t calm down.  I know I cried more than he did, and rightfully so-it’s a hugely emotional situation.  I was so scared, but more terrified of the outcome if I didn’t inject him.  When relaying the situation to our allergist at our follow-up appointment he said, “You did the right thing”.  Doing the right thing was so worth it-unnerving, but worth it.

Here’s another situation for you.  A friend recently had sushi two days in a row.  After the second day of having the fish with the sushi, she broke out in hives and was having esophagus spasms.  She took some Benadryl and went to bed, setting her alarm to wake up for the next dose.  By the next morning she was texting me, letting me know her lips were swollen along with the hives, and was heading to the ER.  They promptly gave her epinephrine, Benadryl, and prednisone.  Within a couple of hours she was heading home.  The only differences in this situation was that this was a slow, almost delayed reaction.  In some ways, I’d almost describe this as a biphasic reaction, but again, I’m no expert.

In both instances, there were at least TWO symptoms.  I am not a nurse or doctor, just another food allergy mom, but that is what I’ve been taught by our awesome allergist, and what I’ve always read.  I recently saw a visual guide originally from Allergic Living Magazine that outlines anaphylactic symptoms, as well as what to do after administering epinephrine.  Click here to see the guide and print it out to share with family and friends.  While you’re at it, print one for your refrigerator.  I’ve already printed mine and mailed it out to my sisters-in-law that wanted more info on our little man’s allergies.

How much does the general, non-allergic public know about anaphylaxis?  I just put out a quick survey on my personal Facebook page, wanting to know how much non-food allergy people know about anaphylaxis and administering Epi-pens.  Here it is….

Quick survey….WITHOUT using Google or other help, answer the following question. If you answer, I may use your (anonymous) answer on my next blog post.
What are the symptoms of anaphylaxis that needed an injection of an Epi-pen?

Here are the answers I received….

Response #1:  When I was getting allergy shots, I had an anaphylactic reaction (I know right?) Since it was at the allergy doctor’s, it wasn’t an actual pen, but I did get a shot of epi. What brought it on was a feeling of being far away and voices were very faint, I felt like I couldn’t swallow…felt like something was stuck and I couldn’t swallow it down or swallow around it. Also my palms and scalp got very itchy. By that point I’d flagged down someone and they gave me epi. It happened a 2nd time, and I had the same symptoms, only they manifested much quicker the 2nd time.

Response #2:  Shortness/loss of breath, swelling, sound becoming faint/roaring in your ears, weakness, redness, feeling faint, wanting to close eyes… I’m sure there’s more, but those are my reactions and why I’ve used my epi on myself.

Response #3:  Facial swelling (or other significant body swelling), respiratory distress, esophogeal tightening, or a reaction that involves two or more body systems. Coming from a person who just had my first ever allergy reaction.

Response #4:  ….sneezing and having trouble breathing by the second sneeze, and I immediately realized she was having an allergic reaction…

Response #5:  Swelling of the tongue or throat, difficulty breathing, “itchy” throat…

Now, all of these individuals except two have experienced anaphylaxis themselves.  Regardless, in all responses there were at least two symptoms being described, and that is my point with this post.  I want people to be aware of the symptoms and be ready to administer the Epi-pen first if it’s needed.  Something else to remember is to ALWAYS carry TWO Epi-pens or Auvi-Qs.  Why two?  The first one may malfunction, or if medical help has not arrived within 15 minutes and symptoms are still present you will need to administer the second injection.  I can’t stress enough the need to keep that epinephrine RIGHT THERE all the time.  As my son has gotten older, we now have his own “Epi Bag” that goes with him if our daughters diaper bag is not with him.  I currently carry is Epi-pens, Benadryl, and asthma inhaler, as I don’t feel he’s old enough to do that himself.  We are getting into a really good habit of keeping that bag with him at all times, or within a 60 second distance.  For example, if we’re playing at the playground, the Epi Bag or diaper bag is in the stroller at the edge of the playground.  Or, if he is going to the barn with his Poppa, the Epi Bag goes with them because it’s a 2 minute walk to the barn.  In the past few months, I’ve read too many articles of anaphylaxis deaths-three to be exact.  Why so many?  They did not have their Epi-pens with them, or in one case it was a first time reaction.  Bottom line?  Epinephrine saves lives.  Know how and when to use it, and don’t be scared to use it.  The outcome of not using epinephrine is way more scary.

Disclaimer:  I am not a doctor.  The information here is what I have been taught and learned in our food allergy journey.   Do not use this information in place of medical care.  If you are having an allergic reaction emergency, call 911.