Our First Experience With the Epi – All the Details and 16 Lessons to Take Away
“Mommy, I don’t think I can talk anymore.”
Those were the words of our oldest son 12-1/2 years ago in November 2001. He was 4 and just experiencing his first anaphylactic reaction. He put a piece of banana bread with walnuts to his tongue, spit it out and started crying. He said his throat hurt and began having labored breathing. We were new to the world of food allergies – only knowing one other child with an allergy but not experienced in the reactions – and started asking our son questions to ascertain what was happening. After a minute or so, he forced out those words, “Mommy, I don’t think I can talk anymore.” His breathing had become very labored and uncomfortable We gave him Benadryl and sat him on the couch. We didn’t have an Epi-Pen. We didn’t call 911. We didn’t understand what was going on. We didn’t understand the severity. We should have. I sat next to him trying to comfort him, but feeling helpless, hearing him wheeze like a child having a severe asthmatic reaction. I thought of giving him my inhaler, but knew that asthma really couldn’t be the cause. He did nothing that would have provoked asthma and as far as we knew he didn’t have asthma. My wife believed the Benadryl would do the trick while I was simply clueless. We didn’t even call the neighbor with the food-allergic child for her Epi-Pen or advice. Basically, we were caught off guard and extremely lucky that our son is still with us. His anaphylaxis stopped just shy of closing his throat and he ended up “returning to normal.” (In retrospect, we had come to realize that he actually had 3 other tree nut exposures and reactions, but none were serious.) So Lesson 1: When people say each reaction can be different in its severity and that one reaction has no bearing on the severity of the next, believe it!
In the ensuring 12-1/2 years, not only has that son (“T” – the handsome guy from the video on the home page of AllergyEats) been formally diagnosed with a tree nut allergy, but 2 of our 4 others have also been diagnosed (“K” with peanut, tree nut, dairy, egg, sesame, and EoE – eosinophilic esophagitis – to dairy, and “B” to egg). We’ve had accidental exposure to dairy and egg with my middle son, but never anaphylaxis. Only GI issues. Basically, we’ve been lucky. We’ve never had to use an epinephrine auto-injector in all those long years.
T was out with his friends while my wife and I were at a fundraiser not too far away. He had his Auvi-Q’s with him as he always does (we use a mix of Auvi-Q’s and Epi-Pens in our family) – and thank goodness as my wife and I had no reason to carry auto-injectors that night, neither of us having a food allergy. T’s a responsible kid with respect to carrying epi, despite now being 16. Lesson 2: Teach your teens to carry their autoinjectors. Help them find a way to avoid any embarrassment they may feel. Have them read this story if necessary. T’s friend’s father agreed to drop him off at our location at the end of the fundraiser and we would take him home from there. When he arrived at 10:15, most people had cleared out, but we, a few others, and the event organizers were still there – all people we’re close to. So T came inside and found us. We were near the dessert table which was nut free and I had just tasted an amazing chocolate ball. It was basic chocolate with 2 other ingredients to spice it up. All nut free. I said, “T, you’ve got to try these – they’re amazing.” So he did. He ate one without incident, then went for one more.
That’s when it happened.
He spit it out and told my wife that his throat had suddenly started hurting. I hadn’t heard him say this, but when I turned around they were walking out and she had her arm around him. I caught up to them at the front doors and my wife filled me in on the situation. As we slowly kept walking, my wife asked T what he wanted to do. He said “let’s just go to the car.” However, I insisted that he sit down right where we were. I wasn’t sure what was happening – he wasn’t experiencing that immediate throat-closing anaphylactic reaction I always expected from another tree nut exposure, just a strong discomfort in his throat. Nevertheless, as I’ve learned from everyone in this community over the years, including from the wonderful Dr. Michael Pistiner of Boston Children’s Hospital and allergyhome.org, you don’t keep someone in an upright condition if they’re experiencing anaphylaxis. So I wanted to be cautious. Call that Lesson 3: Don’t keep someone who may be experiencing anaphylaxis upright on their feet. Due to a possible drop in blood pressure and the need to keep blood going to vital organs, many say the best protocol is to lay the individual down with their legs up. I’ve also seen advice saying that if breathing is troublesome, sitting instead of laying down may be more appropriate. Either way, keep the individual where he or she is and certainly don’t let the person try to walk.
As we asked T about his symptoms, it sounded like he was experiencing an unusually strong case of OAS (Oral Allergy Syndrome, which is uncomfortable but not dangerous). It wasn’t progressing, but it wasn’t comfortable. I needed to know if that’s what it was. I went back inside the venue to ask the caterers who brought the chocolate balls what was inside. They said “no nuts.” Clearly, they already heard about our situation and were feeling defensive. I said “Forget the nuts, what else is inside.” They repeated “No nuts.” I then tried “Look, I know there are no nuts and there are only supposed to be these 3 ingredients you originally told me about, but was there any fruit in them.” (That would help me determine if the reaction could be OAS.) I never received an answer I felt confident in, but I didn’t have time to speak to them further – the situation that needed my attention was outside. (As an aside, we’re still trying to get full details from the caterers now, for the sake of their future customers and themselves.) Lesson 4: As with the best of restaurants, anyone (including a nut-free caterer) can make mistakes. My wife and I believe those nut-free desserts were cross-contaminated with tree nuts somehow. Always be cautious. And if you’re not comfortable – especially after reading this – avoid even the nut-free treats.
Back outside, my son continued to feel the same. His throat hurt and swallowing felt labored, but his breathing was fine, he had no hives, no redness, and no other symptoms. What the heck was this?!?!! He took out his allergy pouch and gave himself Benadryl. (He keeps a small plastic container that you can buy anywhere with 2-1/2 tsp of Benadryl pre-measured in it.) In retrospect, we forgot that he had already taken 2 tsp of Benadryl around 5:00 for his seasonal allergies, not that that was necessarily relevant at the moment. Anyway, we then waited… with Auvi-Q in hand and communicating amongst the 3 of us in a calm, almost clinical way. We never panicked. I would not have expected such a calm reaction in this situation, but we were “ridiculously calm.” HUGE credit to this community and everything I’ve learned in it over the past 5 years (since I decided to start AllergyEats) for giving me clarity on various scenarios and how to handle them. Lesson 5: Learn from our experience and the experiences of others who share online – they’re a great resource! Keeping calm and clear-headed is critical to making the right decisions as well as to best comfort your child.
T’s symptom didn’t subside. My wife and I wondered if this feeling – this ONE symptom – could have had an anxiety component that was exacerbating an otherwise minor reaction, perhaps just OAS. It’s not uncommon. Yet, as we are familiar with the symptoms of anxiety, we knew that T’s throat problems were not one of the many someone with anxiety experiences. The deep gulping breaths he starting taking were likely anxiety-related, but not the throat discomfort. Lesson 6: Realize that anxiety can cause its own symptoms, but if you know the signs of anaphylaxis well, you’ll recognize a real reaction. And if in doubt, treat it as a real reaction! Epinephrine can’t hurt (there are, of course, rare and specific exceptions). My wife decided to seek more Benadryl as T’s symptoms continued and possibly strengthened a bit. I didn’t think this was the best course of action. My belief – which can be debated – was that if the initial dose didn’t work, more wouldn’t do the trick either… and it might be wasting precious time. I said, “It’s time to hit him [with the injector] and finish this.” We looked at each other… discussing without saying a word… when someone brought more Benadryl, which he began to drink. I explained to T that we might have to “hit him” and that it would make him more jittery and likely more anxious, but should relieve the symptoms immediately. My wife and I continued to communicate silently, me with the Auvi-Q in hand, as he drank the additional Benadryl.
Then my son stopped drinking and said it. “Let’s get this over with.” And he pulled up the leg of his shorts. It was 10:40. I didn’t give it a second thought. Lesson 7: When you decide to use the epi, be strong in your conviction – you’re doing the right thing. Don’t hesitate! One might make the argument we waited too long. They may be right. It’s a judgment call. Err on the side of using it.
I took the injector, held it against his thigh, and pressed (this is how the Auvi-Q works, a little different from the Epi-Pen). It was just like the trainer. It counted down from 5 (with Epi, you count to 10) and said “injection complete.” My son IMMEDIATELY said “It feels better now.” Seriously?!! – I JUST took the thing out of his thigh! Lesson 8: The epi provides immediate relief, so use it! As he sat there, now feeling okay, my wife – following proper protocol – called 911. Lesson 9: Always call 911 after using the epi and go to the hospital. As you’ll see later, proper monitoring is still critical. I asked T how the needle felt. He said he didn’t feel it. I was surprised and literally looked at the device again to see, but of course it worked – he was feeling instantly better. And then we noticed a tiny drop of blood at the injection site. Did he not feel the needle because it was so tiny or was his focus at the time elsewhere? I’m guessing the latter, but the bottom line is that I’ve heard this from many others when getting injected with epi. Lesson 10: Don’t fear the needle. It’s tiny. The size of the devices are due to the medication they hold. And who really cares about the size of a needle that can save your life!?!
Roughly 10 minutes passed before the ambulance arrived. An unacceptable period of time in my mind – good thing we know to always carry a second injector just in case. Lesson 11: Always carry 2 injectors. In very rare cases, one may not work. More likely, if you need the second – which is again rare – it will be because the anaphylactic patient is experiencing a resumption of symptoms. But we didn’t need it. As the ambulance pulled up, I walked with T to the paramedics. I stayed close with my arm ready to catch him if he should stumble. He didn’t. I told him what to expect. “They’ll probably want to keep you in the ER for 4 hours or so to make sure the symptoms don’t return.” “Oh man,” he said, “I wanted to play video games with my friends tonight.” Yes, he was feeling better. 🙂 But we needed to follow protocol. So they loaded him on a stretcher into the back of the ambulance and told me to sit up front. (My wife was going home to our 4 other kids while I was going to do the hospital run.) I asked to sit in the back, wanting to comfort him should anxiety arise. The paramedics refused. They were the smart and experienced ones. I had to comply. There was a small window between the front and back in case I needed to see or talk to him. I only asked once “How are you doing, T?” It was more to let him know I was there and with him. But he was fine.
And that’s the only time I truly felt my own twinge of anxiety on this journey so far. We had been so focused on thinking through and managing the situation outside the fundraiser that we didn’t have time to feel emotions. Heck, I later found out that many of our close friends were literally standing right next to me for a decent period of time and I never knew it. But now I had time to think. The anxiousness of the situation hit me for about 5 or 10 seconds, but I knew I had to shake it. Our journey wasn’t over and T would need me to be calm and strong. I said a prayer and asked God to watch over T. And yet, I now had another anxiety to deal with. I was sitting in the “death seat” (passenger seat) of a flying ambulance going through intersections at speeds that belong on a race track!!! Yes, we had the traffic lights, the flashing lights, and the siren (when necessary), but I’ve gotten used to expect that one idiot driver. Please, please, please no one try to beat the light or make an ill-advised right on red. They didn’t. I survived! (A little humor doesn’t hurt when recounting this whole story. Hey, that was what went through my mind. I’m giving you everything! :))
We arrived at the hospital at 11:05. T was immediately put in a room and hooked up to various machines to monitor his vitals. He maintained the IV drip that was administered in the ambulance. Then, the doctor arrived.
After we shared all our details, the doctor said to me. “Thank you for giving him the epi. Many people don’t because they’re too scared. But this is a life saver and you just made my job much easier.” I was taken aback that she literally thanked me. Lesson 12: I beg you all to learn from these words! The epi is a life saver and must be used! Yes, I know I’m repeating myself. It’s worth it. (Incidentally, I asked her how many food allergy patients she sees each day and she replied “at least a couple.” I asked the ambulance driver the same thing and he said it’s very common.)
So all was well. ESPN was on the TV and T laid there as I sat next to him. We discussed how the pitcher on his fantasy baseball team just got crushed. Then we started speaking less and less as the congestion he gets from his seasonal allergies got really bad. REALLY bad. It must have been the way he was reclined. That happens to me and all of us if we’re in a “bad” reclining position. I went to get him tissues, but they didn’t help. I noticed that his face seemed to have a lot of acne – more than I’ve ever noticed. But then again we were under a huge bright light. Being color blind, I didn’t notice the big red rash that had started on his chest. But suddenly he started feeling nauseous. No big deal, I thought. He’s got a lot of meds in him. But I’d better tell the doc. It was midnight.
She came in. She noticed the big rash. Now, even I could see it. Then she opened his shirt more and saw hives extending from his midsection to his face. He also had a big white spot on his face. It dawned on me that the congestion was probably a symptom. Yes, he was experiencing the second wave of a biphasic reaction! They added steroids to his IV drip. He confessed to me that he was feeling pretty anxious (in a calm, 16-year-old kind of way). All I could do was reassure him that we were in a hospital with experts, they had just administered medication to take care of him, and that the medication was a stimulant which would naturally exacerbate any anxiety. Lesson 13: THIS is why you ALWAYS go to the ER after administering epi. I believe my numbers are right when I say biphasic reactions happen 7% of the time and triphasic reactions 1%. Plus, reactions – initial or secondary – can occur up to 48 hours after exposure (though I’m assuming it’s rare after 4-6 since that’s how long the hospital said they’d need to keep us and I’ve always heard 4 is standard). What would have happened had we not called 911 or if we refused to go to the ER?!
T’s new symptoms subsided rather quickly once the new drugs were introduced. He could breathe comfortably again. There was no redness, no hives. The doctor said something very interesting. She said, “I don’t believe he had anaphylaxis earlier, but I’m convinced he would have if you hadn’t given him the epi.” I hope you all read this. Twice. Lesson 13: Did I mention – Don’t Fear Using the Epi! Fear NOT using it!
Anyway, the clock was now reset. We’d be there until between 4:00 and 6:00 am.
We stayed awake watching TV. Frankly, now I was feeling a little edgy. While his vitals were being monitored, he and I together caught those last symptoms before the machines “saw” anything. I didn’t want the next reaction to go unnoticed until it was more severe. So I didn’t want to sleep. However, T fell asleep around 1:30, still symptom free and feeling fine. I soon allowed myself to drift off as well, though I woke up quite often – checking him every time.
At 4:30 the doctor entered to check on T and I woke up. She said we were good to go if we were ready. Well, we had to leave sometime. So now was it. By the time we got into a cab, it was just shy of 5:00 am. I didn’t realize the sun came out that early these days.
We were discharged with a new prescription for Auvi-Q’s, as well as one for Prednisone. He would take Benadryl every 6 hours for the rest of that day (Sunday) and take the Prednisone for the full 2 day course (Sunday and Monday) to handle inflammation from the whole experience.
When we got home, we explained everything to my wife who – as you can imagine – didn’t sleep much or well. T then took Benadryl and he and I both went back to bed. I woke up before him. I admit I peeked in on him sleeping to make sure he was breathing. He was. I found out my wife did the same a little earlier.
Sunday was a tired day for us. T’s chest hurt early on. That was probably from the inflammation as we hadn’t gotten the Prednisone yet. He was exhausted and groggy all day. Clearly a symptom of the Benadryl. As for my wife and I, we were really hesitant to leave him alone. We knew about reactions that take place 24-48 hours later. Eventually, we both found ourselves out and about (5 kids on a Sunday in prime sports season), comfortable that our 16 year old could make the right decisions should anything happen. (I had asked him previously if he could have self-injected if we weren’t there and he confidently said “yes.” Plus, he now knew the protocol first-hand. He’s a smart kid – we could be comfortable… to a degree ;)). Later in the day, he reported that his stomach was bothering him. That’s the Prednisone. Otherwise, it was a normal day. My wife and I did have an interesting realization, however, as we reviewed the entire situation. As mentioned, we have 5 kids. They are all active in sports and other extra-curriculars. We also try to be as active socially as our large family allows. That all leads to a really busy schedule every day, 7 days a week. We live by that schedule. That may not be the optimal way to live, but in May and early June, it’s our reality. What we realized, and we’re not proud of this but needed to acknowledge it and need to share it with you in the hopes that you’ll learn from it, is that in the heat of the moment – at 10:45 on Saturday night – we each felt a tiny hesitation about the epi because we didn’t feel we could afford to throw our whole routine off with 4+ hours in the hospital and the resulting effect on our consciousness the next day. It was in our head, but fortunately was overruled by reality and good sense. However, let this be Lesson 14: Focus on the here and now and what needs to be done. The world will continue to revolve if you have to alter your schedule, miss that meeting, cancel that dinner plan, etc. Consider the alternative (but don’t dwell on it – you have work to do!).
On Monday, T stayed home from school and slept in quite late. I went to the office as usual and my wife carted the other 4 to school and through all their daily activities. Yes, I checked on him again before leaving. 🙂 T felt better as the day wore on, finishing by doing all his homework and studying for today’s Physics test. He left for school this morning feeling great. We’re back to normal.
I reflect back with some pride knowing that, when the fire drill was no longer a drill, we kept extremely calm and clinical and did the right thing. Despite the slow onset, despite the biphasic reaction, our son is safe and home – and we know it could have been far worse. The doctor said as much directly.
A part of me felt slightly uncomfortable however until today. I couldn’t feel better until he felt better – until the effects of the Benadryl and Prednisone wore off. I now feel better.
I feel no regret for giving him that chocolate ball – I believed it to be safe. I feel no anger toward the caterers – they thought they were being safe. I feel no animosity toward the ambulance – I have no idea why it took long, but I’m sure they did their best… and they kept my son comfortable and safe (while I was praying in the “death seat” alongside the driver).
What I do feel is grateful! Extremely grateful. To the doctors, for doing what they always do best. To our friends at the event, who supported us (whether I was aware of it or not). To the rescue personnel, who did their job. To my wife, my son, and myself, for not panicking into making ill-informed decisions. To God, for being there. And I am very grateful to this community. I have learned so much over the years reading and hearing about everyone else’s experiences – the right decisions and the wrong decisions. We are all in this together! And if I hadn’t learned from you that giving an epi too late can be fatal, that epinephrine can’t harm your child, that the relief of an epi is virtually instantaneous, that getting an anaphylactic sufferer off his feet is important, that calling 911 after administering an epi is “mandatory,” etc., well… thank you for teaching me! Also, thank you to everyone – all our friends, both offline and online – for your expressions of support upon learning of our eventful evening.
I also have a greater respect for the difficulty non food-allergic parents (whether that be the parents of friends, our children’s teachers, etc.) must have in these situations. Ours was not the kind or reaction you teach others to prepare for. In those lessons, the reactions are immediate, severe, and crystal clear. This wasn’t. We needed to analyze this carefully. How could someone who doesn’t live this every day do the same? Lesson 15: Be grateful to those who take the responsibility of caring for your food-allergic child. And be understanding of any concern they may have. Take as much time as they need to help them understand the action plan and feel as comfortable as possible with it. Thank them!
It is over. We’ve done it. We’re in “the club.” We are better prepared for the next time. In an odd way, we are actually glad that this first epi experience happened on our watch rather than when he is off in college in a year and a half. Now, he is better prepared. We also had a chance to explain everything – once again in that calm, comforting manner – to our middle son with allergies (the little one – age 4 – wouldn’t understand). Amongst other things, K will hopefully now know not to fear the needle. The needle that my older son didn’t even feel. Lesson 16: Find the bright side if possible and use your experience to better prepare for the future. I almost wish my parents, in-laws, and other caregivers of our children were there to see how to handle a reaction.
I don’t look forward to the next experience, but I know we’re all better prepared for it. I have written this in the hope that those of you who haven’t “joined the club” yet can learn a little from our experience, much of which was learned from others who were generous enough to share theirs. I pray that you don’t fear the epi, but that you fear NOT using it.
I’ll let Teri Noto’s words from the AllergyEats Facebook page sum it up, as she said it beautifully:
I am an adult with life-threatening food allergies. My biggest fear is not that the people around me will stab me with a needle full of life-saving medication. My biggest fear is that the people around me WON’T stab me with a needle full of life-saving medication when I need it. The thing to fear is anaphylaxis, not the needle.
I think one of the most important life skills a food allergy parent or food-allergic person can have is losing the fear of needles. Accept that you WILL have to use it sometime. Realize that the thing to fear is anaphylaxis, and that the epinephrine is the thing to embrace. Love the shot. Seriously, move the earth to come to LOVE the shot. That little needle, which is so much smaller than you or your child, is your life-saver. It is what brings relief, makes the horrible symptoms STOP, and saves lives.
If you or your child were in a burning building and a firefighter pulled you out, would you not love the firefighter? Would you not give that firefighter a hug, cry on their shoulder, let them know how grateful you are? You would never fear the firefighter–just the fire. Your shot is your firefighter. Anaphylaxis is the fire. Fear the fire, not the firefighter.
So well said, Teri.
Thank you all for reading. Be safe. And, as Teri says: “Love the epi!”
PLEASE SHARE THIS WITH ANYONE WHO YOU BELIEVE CAN LEARN FROM THE DETAILED RECOUNTING OF OUR EXPERIENCE. As mentioned, the goal of this piece is to inform and help. I hope others will have the conviction my wife and I had, which was a direct result of what we learned from others in this great community.
Now go rate some restaurant experiences on www.allergyeats.com and the free AllergyEats app, wouldya? 🙂