Anaphylaxis. It’s dramatic.

 

Source: Flickr Creative Commons License
Source: Flickr Creative Commons License

On September 18, 2015, an 18 year old college freshman in Ontario died of anaphylaxis after ordering a smoothie at the college cafeteria. She had known peanut and dairy allergies. She did not have her EpiPen injectors with her.

Also in September of this year, a 16 year-old high school student in Colorado died after taking a bite out of a s’more. He did not know the s’mores were made with Reese’s peanut butter cups. He usually kept his EpiPen with him in his car, but on this occasion he was given a ride by friends, and did not have the Epipens with him. His father came to the scene, gave him EpiPen injections, drove him to the ER, performed CPR in the hospital parking lot, but it was too late. He had a known allergy to peanuts.

In June 2015, a 13 year old boy was inadvertently given a candy bar with nuts at school.  No antidote or emergency help was called until it was too late. To heap tragedy upon tragedy, this young teen was due to be a bone-marrow donor for his younger brother.

 

On Thursday, October 8, 2015, my son had his first anaphylactic reaction which required an EpiPen.

We were, thankfully, already at Children’s Hospital outpatient clinic when this happened, undergoing a food challenge for “pecans”.

After eating one pecan, his throat started to close (he felt a lump in his throat) and said he felt terrible and asked for Benadryl. I gave him Benadryl under the nurses’ instruction. But he became worse and worse. Not long after, he started vomiting. Then he started sneezing, and it was clear he was very ill. All of a sudden there were 4-5 people in the room. He was given an EpiPen.

Within seconds, minutes, it became an emergency situation.  They hooked him up to a blood pressure monitor and monitored every 5 minutes. If the medicine didn’t work after 15 minutes, he’d need another injection. Thankfully, he gradually began to improve.

Within 15 minutes we could see the medicine was working. After an hour he was able to get up, talk and walk. Then, he was given Prednisone, to help prevent a delayed reaction, and monitored for one more hour.

(He was devastated- not because of the pecan- but because he’d have to miss his flag football game later that day.  The doctor said no exercise of physical activity — it can exacerbate an anaphylactic reaction. Obviously, I was not expecting this to happen. It did take everyone by surprise, even the nurses said they did not expect it. He had recently passed a wheat and soy challenge, which I did at home, and his other blood allergy levels had decreased drastically, so we were all optimistic. After all, we don’t do “food challenges” unless we think there is a chance of success. )

I have seen my kids with all manner of illnesses and conditions: the flu, chicken pox, severe pneumonia, asthma attacks, receive emergency stitches, and more, but this was something altogether different and new.

It was frightening at a different level.

I have been dealing with food allergies for 11 years. It is the first time an EpiPen was necessary.

If this was the result of eating one pecan, with a “low” allergy, I can’t imagine what a peanut would do… he is 15 times more allergic to a peanut than a pecan.

I can tell you now, my vigilance has increased. I can’t take risks, or stop being vigilant.   Before this happened, I was careful, but because he had been improving, I’d relaxed here and here, let some things go.

I can’t do that anymore.

I will continue to be an avid label reader, but I can’t take another risk with an unclear label. I can’t risk going to someone’s house that has peanut butter out on the table. I can’t risk his life. And after watching what happened with a pecan… I can say it with documented fact: It is a life-threatening risk.
Before, there was a “mystery” and a trepidation regarding the dreaded “EpiPen”.  I was actually afraid of using it. I’m glad I haven’t had to use it. But, now I know what to do. No more fear. There is greater harm in not using it.

Most people, I have found, are understanding and patient with the label reading, the questions I have to ask (I literally have to ask EVERY ingredient used in a recipe if we go somewhere), the fact that I have to take food everywhere we go, and the general lifestyle changes it involves. Forget eating out at most places. (Though we’ve found two places that are safe: Culvers and BD’s Mongolian Grill).

I’ve experienced responses to food allergies that range from surprise to disbelief…  some people just do not realize how serious they are. Is it really necessary to read every label of everything? Can someone really die from just eating one bite of food? If you do not have to live with this, I know it is hard to understand. It was hard for me to understand until I had to live with it. I get it.

I have personally been told:

  • I’m overreacting
  • It’s in my own head
  • I’m severely limiting my son’s diet unnecessarily
  • The allergies aren’t really that serious
  • It isn’t that big of a deal
  • I should give him the foods he’s allergic to, to try it out

And of course, there is the attitude of not willing to be inconvenienced by giving up peanut butter sandwiches or peanut butter because of the allergy (either in school, or a potluck, etc.)

In the past, I hesitated to use the term “life-threatening”. I didn’t want people to think I was over-reacting. I didn’t want others to think I was being over-protective or dramatic.  I’m not keen to admit this- in fact, I’m ashamed to admit it, because my child needs me to be an advocate, not worry what other people think.

I’m over that now.

It IS life-threatening. People die from one bite of a peanut.

Have you noticed the ages of those who died in the stories above? They were teens. Teens and young adults are at very high risk of anaphylactic death or reaction.

And did you notice the common factor in their deaths? It was a lack of immediate availability to Epinephrine (EpiPen). Epipens can and do SAVE LIVES.

People with food or other severe allergies need access to their EpiPen and they need it immediately to save their life.

Even with the highest level of vigilance, and doing all that we can do to prevent exposure and reactions… do you know what is frightening? I can’t prevent or stop everything. I know that any one of us can die any day from anything. We live in a world of many unknowns. But we all must eat food every day, right? Eating is ubiquitous.  Food is everywhere we go.  We can’t avoid it (and we are blessed to have food available, I recognize that).

It is my job to protect this child.

It may be an inconvenience to others to give up peanuts or peanut butter.

But, I don’t want the “inconvenience” of not ever seeing or talking to my child again.

That’s the kind of “dramatic” I prefer to avoid.

***

HELPFUL RESOURCES:

Do you know how to administer an EpiPen? Do you know what the symptoms of anaphylaxis are?

Here are two videos demonstrating how to use an EpiPen and other helpful information:

https://www.youtube.com/watch?v=EN83hen4D-Y

https://www.youtube.com/user/EpiPenOfficial

 

When to use an EpiPen:

https://www.epipen.com/about-epipen/when-to-use-epipen

 

Helpful articles about food allergies:

 

  • Food Allergy Research and Education:

https://www.foodallergy.org/facts-and-stats

https://www.foodallergy.org/document.doc?id=194

 

  • Mayo Clinic:

http://www.mayoclinic.org/diseases-conditions/anaphylaxis/basics/definition/con-20014324

 

  • Asthma and Allergy Foundation of America:

http://www.aafa.org/display.cfm?id=9&sub=20&cont=517

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