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First time using the Epi-Pen and the Anxiety that has followed

Posted on January 18th, 2015 by Alison Read 9 Comments - Add Your Own »

epi pen injectionI finally used the Epi-Pen on my daughter after eight years of managing her food allergies. I used it because I had to. I used it because she asked me to.

We were in Mexico, at a place we visit every year. My daughter is extremely responsible about her food allergies, and carries her “kit” (containing two Epi-Pens, Benadryl and asthma inhaler) with her everywhere she goes, even to the pool. I also had an extra Epi-Pen with me on the trip, so we had three in our possession. The story of BJ Hom is always in the back of my mind when we travel to Mexico — it was there that this young man had an anaphylactic reaction to peanuts but the family did not have an Epi-Pen with them (he had only suffered from hives in the past so they didn’t think it could get more serious than that). We are prepared for an accident in case our vigilance about reading labels, asking questions, and avoiding uncertain foods fails.

On that afternoon at the pool, she selected a popsicle out of a popsicle cart. It had ingredients on the label, both in English and in Spanish. It was a coconut popsicle, containing coconut, cream, milk, sugar, and some additives. Nothing she hadn’t eaten before. Within minutes she came to me and told me that she didn’t feel right. As she was telling me, a large hive appeared on the skin in the lower corner of her mouth. I knew this wasn’t good. Her face had lost its color and dull, dark streaks appeared under her eyes. She said her throat felt “bumpy.” We pulled the Benadryl out of her kit and she took one, and then another. Hives popped out on her stomach, and then on her back.

That day, by our good fortune, my father was hanging out at the kid pool with us. He is a retired pediatrician and I was so glad he was right there at that moment. I showed him the hives. He suggested we head back to the room where he had prednisone in his medicine bag. Prednisone is a corticosteroid that can help reduce swelling caused by allergic reactions, but it is not an immediate treatment since it comes in pill form and takes a little while to have an effect. When we arrived at the hotel room, he gave her a dose of prednisone, but as she held on tight to her epi-pen kit, she said to me, “Mom, I want the shot.”

I looked at my dad and he and I both nodded – let’s do it.

Now, I have to admit that for all of these years I have had a fear of giving the Epi-Pen. I know my allergy mom friends have done it, I know it saves lives, my pediatrician has scolded me for not giving it in a couple of close-calls… I have no explanation for my anxiety about putting this shot in my daughter’s leg. (Perhaps I was scarred by the giant epinephrine shot scene in Pulp Fiction? But it did save Uma Thurman’s character’s life, so…)

I asked my dad to give her the shot. I sat on a bed next to my daughter, while he was on the other side of her and stuck the Epi-Pen in her leg. She was looking at me, away from the shot, and said, “That was it?” It felt like barely a pinch to her. Within minutes, the hive on her face disappeared, her color came back and she was breathing easy. She was a little worried about her rapid heart beat, but we assured her that it was the medicine taking effect and that was normal.

Normally when you give an Epi-Pen, you are advised to go to the hospital or call 911. Sometimes one Epi-Pen isn’t enough, or it is given too late to reverse the symptoms. According to the Epi-Pen website “Get emergency medical help right away. You may need further medical attention. You may need a second EpiPen Auto-Injector should symptoms persist or recur. More than two sequential doses of epinephrine for a single episode should only be administered by a healthcare provider.”

Because we were in Mexico, and we had another Epi-Pen, and my dad was there, and she already had prednisone and benadryl in her system, we monitored her at the hotel. And she was fine. And then I let myself cry.

Since then, her anxiety has risen to a new level. She abstained from eating dinner, even a bowl of rice, while our family was out at a restaurant with friends one night. She refused to go to a volleyball tournament because I was not the one driving the carpool and I wouldn’t arrive until later. Luckily, the mom driving the carpool was a trained nurse and carries an Epi-Pen, but even that almost didn’t convince her. So, this is a new chapter in our lives — the Anxiety Chapter. She strives for independence and freedom, but is weighed down by her fears. I wonder how long this chapter will last.

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Comments

  1. Maybe a few visits with a counselor would help? Poor kid and poor mom … it’s hard, I know. I haven’t dealt with allergies, but I have dealt with some severe anxiety in a kid. We took him to a counselor for a few visits who taught him how to deal with his anxiety, distraction and self-talk techniques, which he still uses some 7-8 years later.

  2. Hi Fatcat… have definitely thought about a counselor! Thanks.

  3. Alison,

    I’m so glad you got to write about your experience and I hope it provided you a release! So glad all turned out well for you, your daughter and your entire family, in general. So scary! Hope you find some good responses to your post.

    As for my experience, as I previously shared with you years ago, when my youngest daughter had what they called a “pre-anaphylactic” reaction to what we think was exposure to cashews – she was a little over a year old. She was clearly bothered by something as she was rubbing her face furiously into my chest…I noticed hives developing on her face, around her mouth and then I saw her lips swelling up. We gave her benadryl and I immediately drove her to the Emergency room which was less than five minutes away. First time to run red lights but I did so cautiously and it’s a pretty remote area north of where we live. The doctor saw us immediately and gave her the Epi-pen at the ER, as well as prednisone. Don’t know why I hesitated to use the epipen myself but she didn’t seem to have any respiratory problems/no trouble breathing so I figured I could make it to the hospital in time.

    Knowing what I know now and the tragic stories I’ve heard about waiting to administer or taking too long before administering, I know now I will not hesitate using it as soon as possible.

    I think part of the reason I hesitated then was because I didn’t know at the time, when her reaction was developing, what, if any, exposure she actually had. There was nothing we knew around that she could have come in contact with that would have caused this type of reaction. It wasn’t until later that I discovered underneath the couch at my in-laws, whose home is always so pristine and where she was playing, that there were small bits of cashew nuts either she had chewed on or were crumbs from a previous serving enjoyed by someone else from a day or two prior to our arrival.

    I recall the Pediatric ER doctor warning us that it looked like it was a pre-anaphylactic attack and that next time, a subsequent exposure could be far worse! He recommended that we keep an Epi-Pen Jr. on us at all times, which we were already doing, but he also advised us to have some prednisone on-hand, to help stave off the ill effects of the reaction until we can get to an ER. Yes, the Epi-Pen Jr. is what is advised to serve that cause, but he said if we had any prednisone in our medicine cabinet, it couldn’t hurt, even if it was expired.

    I think it helped having your dad, the retired pediatrician with you, and I think the prednisone was key along with the Epi-Pen and Benadryl!

    As for her new found anxieties, I do recommend a counselor. It will do her a lot of good and will help her realize the reason for her fears and apprehension and help her come to terms with what she can and cannot do. It may all come down to realizing the lack of control one has when you are someone living with life threatening food allergies (or being a mom with a child with life threatening food allergies). And coming to terms with that fact, and coping with how to understand and manage that, will help her move forward. She just has to talk it out, hear herself say the words, and come to that conclusion. It may also bring to the surface other factors for her fears and that’s a good thing. It’s the unknown that can really screw things up and not let you live your life to the fullest!

    Hope that makes sense! You know where I am coming from. Your fellow warrior F.A.B. mom of two young girls with multiple food allergies! {{{hugs}}}

  4. Hi Yvonne,
    Thanks for your long comment! I know it will help people looking for support. You have supported me a ton over the years! 🙂

  5. I think a therapist can be so helpful. And there are positive takeaways from this frightening experience. The things you all did right. Your daughter paid attention to her body. She told you. You had the epipens with you. Grandfather was there and gave prednisone so you did not need the hospital. Many many things went right, and much of it was due to you all being knowledgeable and prepared. I do not mean to minimize the gravity of what happened and could have happened, but I think eventually the focus should shift to what went right. She may need a counselor to help move forward and to stop focusing on what could have happened. Trauma isn’t easy to get over, but with help and lots of love and support, I know she will do it.

  6. So sorry for your experience, and for your daughter. I’ve not had to administer the Epi for my son, but have four times in the last seven years for myself (I keep coming up with new food items I’m allergic to – have a very reactive system).

    At any rate – the last time I administered happened to be in front of my food-allergic (then 9 year old) son. It wasn’t planned that way – he walked into the room. But, instead of showing my own concern, I took this as a teaching moment – told him that (as your daughter mentioned), it’s just a pinch, showed how you need to hold the pen for a good count of 10, explained that I had immediate relief in my throat, etc., and went on to explain why my heart was beating faster, etc. Then my Dad drove me to the hospital (I then had to turn my attention to my Dad, who was noticeably nervous!)

    It’s certainly hard to tell someone else to relax or manage their anxiety. However, I can attest to the fact that my reactions are not as severe when I can remain as calm as possible. Anxiety definitely does not help 🙁 I’ve learned to do what works for me, and I’ve had other symptoms lessen (or perhaps I simply feel as though they’re lessened) through deep breathing, etc. Of course, all the while administering my benadryl, epi, and having someone else drive me to the ER (each of these times my symptoms improved with Benadryl, then within 45-60 minutes, worsened – each time I knew there was a chance it could rebound, so I’ve gone to the ER each time).

    This may sound strange, but having come through okay, I was actually glad to have had the Epi experience the first time. Having no expectation to have to use it again (I fully avoid all food items I’m severely allergic to), I had no expectations of (then) three future occurrences! Unfortunately, I’m too experienced at this point, but having gone through it before has made each subsequent time a bit easier for me to take, as I knew what to expect. I think intuition is what should never be discounted – she asked for the pen as she knew it was needed. I can never put into words what that “overwhelming sense of dread” that is often discussed feels like, but it’s palpable, for sure. If I can give only one piece of advice, it would be for you, and your daughter, to never doubt these feelings…

    Best of luck to you both!

  7. Hi Andi,
    Thank you so much for your comment. The last part about intuition and the sense of dread… wow. I will share this piece of advice with my family and friends and other allergy moms. It really is important. I appreciate your words that kids can’t always describe.

  8. reading this story felt exactly what I just went through. My daughter was 9 (still is) and on April 11, 2016, she ate some peanut contaminated sunflower seeds and I had to use the epi for the first time. She still suffers anxiety…me too but not as bad or at least I can hide it from her.

  9. Hi Dayna,
    My daughter does not have the anxiety anymore. It did take a while though – at least six months, maybe longer.

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