What Is Anaphylaxis Really Like? A First Person Perspective (Guest Post)
Today’s guest, Natalie, is a role model for all children with food allergies – having really LIVED her life without letting her food allergies control her every step of the way. For parents of children with food allergies, she is a golden beam of hope and admiration. Natalie made me see that children growing up with food allergies will turn out normal, healthy, so strong, and determined. And did I mention compassionate? Natalie understands, just as our children will, how emotional living with food allergies can be. She reached out to me after Tristan’s first anaphylactic experience and just wanted to be there for me, offering me advice from a child, now young adults’ perspective, since she’s suffered anaphylaxis too many times to count.
Watching my son have an anaphylactic reaction was the scariest thing I’ve ever experienced. After the fact, I wondered what it felt like for him. Was he scared? Did the Epi-Pen hurt? Did he realize how serious his condition was? Natalie has kindly shared her take on some of these questions and I’m sure any caregiver of a child or another adult who has food allergies, will find her step-by-step account to be an eye opener.
To sum it up, I just want to say that Natalie is awesome! Hugs and kudos to her for bringing awareness to the allergy community through her blog and for offering support to moms like me who only want to offer the most normal and happy childhood to our children with life threatening food allergies.
Idiopathic Anaphylaxis- The Unpredictable Path of Anaphylaxis
by Natalie Honodel (see bio below)
It has been almost a year since my life changed drastically. First, let me go back a few years. Well, fifteen years to be exact. I was in the lunch room in kindergarten when I started breaking out in hives and we were unsure what caused them. After seeing a few doctors I was diagnosed with food allergies and from that day on, I have always had food allergies in my life. Even though they have been a part of my life, they have not been the main focus in my life. There were even a few years where I thought I completely had my allergies under control. I would go out with friends, go to school, and live life without really thinking or worrying about allergies. I knew my triggers, worked to avoid them, and knew what to do in case of emergency. However, that picture of confidence was shattered last March when I suddenly went into anaphylactic shock after one bite of peanut butter. Peanuts have never been a problem for me. On every skin test and blood test peanuts have always been fine. Tree nuts were a positive, but never peanuts. In fact, I had eaten peanut butter or peanut products almost every day until this reaction.
Natalie’s Skin Test
Since that day last year I have had six anaphylactic reactions. Six. In fifteen years of food allergies I have not had that many anaphylactic reactions then suddenly in one year I had six. After that day, I was diagnosed with idiopathic anaphylaxis. Some of you may have never heard of that before so let me explain my understanding of this. Idiopathic anaphylaxis is anaphylaxis from an unknown cause. There is no specific trigger or cause, it just happens. Lovely, right? And it has just happened; at home, at friend’s homes, in art class, a variety of places. I just recently connected with Jennifer after Tristan had his first anaphylactic reaction. I had emailed her because I feel like I have a unique perspective on allergies and anaphylaxis. Being 20, I am able to express my feelings and fear about anaphylaxis more than children younger than I am. Jennifer was so sweet to ask me to guest post about what I experience during anaphylaxis.
What Does an Allergic Reaction Feel Like?
I use the analogy of being stuck under water. I used to love going to the deep end of the pool and diving down to try and touch the bottom. On the way up, you feel the pressure on your lungs and you know that your body needs air. You must reach the surface of the water in order to get your deep breath. In anaphylaxis, the feeling is similar. I can feel a reaction starting with just an itch or a sneeze. For me, it usually starts with an itchy feeling in my mouth and throat. It drives me insane because unlike when you have an itch on your leg or arm, you cannot itch your throat. Next, I start to sneeze and have congestion. Soon, it moves to my chest and I can feel it getting tighter. I have a tight cough and know that I am not breathing as well as I should be. While all of this is going on, hives start popping up on my face and neck, my eyes begin to swell shut, and I get excruciating stomach cramps. Within minutes, the underwater feeling is present. I get scared, my mom gets scared, but we know what needs to happen. We have already tried to stop it with the Benadryl and my rescue inhaler, but it is not working. There is no surface of water to break through, I need the epinephrine. Almost immediately within injecting it my symptoms start to ease. I feel like I can breathe a little bit easier and am able to relax. (Now let me add a side note that while this is going on, you must call 911! When experiencing anaphylaxis, you need to seek emergency medical treatment!!)
Natalie with An Allergic Reaction
How Fast Does an AutoInjector Work?
It always amazes me how fast the epinephrine seems to work. Even if I need a second dose after the fifteen minutes or while I am at the hospital, the first one has always provided me with some, if not a great deal, of relief. Using a self-injector is a scary thought for many people. It seems like such an intimidating thing, but let me assure you, it saves lives. It has saved my life six times within the past year. I wish I could adequately describe how much it helps. Not only does it break the surface and allow me to breathe, I feel more at ease. The hives and swelling start to go down and I know I will be okay. Many people think that using the auto-injector will be this horribly painful experience, but it really is not that bad. For me, the buildup before the injection is worse than the actual injection. I just got an Auvi-Q, but in the past have always used the Epi-Pen. I can feel it inject, but it is not a pain. It feels like a quick pinch. I think if you were not having a reaction it may hurt more, but when you are so distracted by all the other symptoms of a reaction it doesn’t seem painful. Now, I will say that a few hours later it is extremely sore. Around the time we are leaving the hospital, it is sore and that soreness does last a few days.
Reactions are terrifying. No one wants to go through one or watch a loved one go through one. The most important lesson I can share and pass on is to be prepared. I blog about my experiences because I have not always been prepared! I have never regretted using the epinephrine injector, but I may have regretted not using one. My doctor and I say “when in doubt, epi it out.” Make sure you and your children know what to do in case of a reaction. Talk about the signs of a reaction and how they may feel. Let them know that there is plan in place for if something were to happen. Each reaction is different and unfortunately each reaction can be worse which is why we, as the food allergy community, need to be prepared and support each other.
Bio: Natalie is a 20-year-old college student with multiple food allergies, oral allergy syndrome, asthma, and a recent diagnosis of idiopathic anaphylaxis. She is a full time student who aspires to one day work in the medical field. Natalie blogs at behindthereaction.com and loves to connect to other families who have food allergies and show that a diagnosis does not need to hold you back from your dreams. You can follow Natalie on Twitter twitter.com/nataliehonodel
You can also reach Natalie via email: firstname.lastname@example.org