A New Epi-pen Case for Christmas

I know many people are looking for new epi-pen cases, particularly for teens, after the Auvi-Q recall. I bought James this one .

(That's the Super Smash Bros symbol for non-Nintendo fans out there. The shop has a lot of different images). 

I have no relationship (other than being a customer) with this shop. I like this case because it seems like it will be large enough to hold the epi-pens when they are in the Veta Case.

A happy(er) Anniversary

As of today, it has been one year since James had needed to use an epi-pen. For the record, it's the day before his birthday. I'm never sure how to talk about his life threatening reactions - all emotion with no language attached. While we were on our way to Urgent Care (note: if you have given an epi-pen, please go to the ER, not Urgent Care), James looked at me and said, "I want to go to Dr. Li. I don't ever want to go through this again."

Eight months earlier, after James's failed food challenge, I had begun researching and had brought up Dr. Li to both him and my husband. James was adamant that he was not interested. He would avoid his allergens and be fine. He didn't want to eat what he was allergic to. He didn't want anything to do with allergists. He wanted to be left alone. On the wise advice from others in the CHA FB group, I continued to mention case studies every so often to keep Dr. Li in his mind, but conversationally.

And although he wanted to be left alone, his condition changed after his food challenge. For the first year after diagnosis, I knew very little about food allergies and that was fine. I read labels without worrying about "crazy" things like were there nuts in the factory (I didn't even know that the label didn't have to reflect that), he ate at other people's houses, whatever was served, out at restaurants - we went about our lives minus his allergens and had only one incident, when he was served nut ice cream at an ice cream parlor (yes, we even ate at ice cream parlors). Luckily, he was sharing with my husband, who ate first and discovered the error.

After his food challenge, I first learned about the screwy labeling laws, when he got sick after having some sprinkles on a cupcake I made and he got sick. He had had his healthiest year his entire life after having his allergens removed (because he had had chronic diarrhea before that) and suddenly, sick again. I called about the sprinkles, and felt my world tilt, 'Could he really be sick from the amount of nut that could be in a bottle of sprinkles?'

Then, it was a tea bag that my husband brought home after a conference. In this case, there was no case of cross contact, but it was a rooibos tea, and, the operator told me in a concerned voice, she thought I ought to call my allergist, because it was a legume like peanuts. And soon, he was getting sick from more and more legumes, until we decided to avoid them altogether.

Which brings use to June 30, 2014, when for dinner, he had mango, melon, and rice (in my defense, I'm sure more was served. I have no idea what anymore). And he had diarrhea. Not unusual. But then, his throat started tightening, which was. He knew as soon as the diarrhea started it was not his usual, and had asked for Benadryl. When his throat started tightening, we went to the refrigerator, talked about the emergency action plan, and he administered the epi-pen to himself.

After a fair amount of testing, the reaction ended up being OAS to the melon. Illustrating the importance of following up with your allergist, Urgent Care called us and diagnosed him with a mango allergy because his RAST test was positive (it is also positive for melon but Urgent Care couldn't figure out how to code to test melon). OAS rarely causes a systemic reaction, however with two systems involved, his allergist agreed it was better to give the epi-pen than not.

Since seeing Dr. Li, James has not lost anymore foods. He has not had any severe reactions. I hope to celebrate this anniversary again next year.

"That's No Ordinary Rabbit"

We are in Food Allergy Awareness Week. Technically, rabbits are food. However, I will not be speaking of them in that context.

Two weeks ago, a dear friend's husband had a life-threatening reaction to their pet rabbit. He had been having asthma problems which were related to the rabbit for some time. The rabbit had been relegated to the garage. Even so, this day, when he went into the garage, he had trouble breathing, used his asthma medication, found no relief, and eventually, was taken to the hospital. He was given epinephrine, Benadryl, and steroids. He left with a prescription for Epi-pens, steroids, and a refill for his inhaler, but, as is so familiar, very little instructions or directions on what to do next.

Here is my advice, having been down a similar path, somewhat generalized, for those who may walk this path again:

Avoid your Allergen

This is an emotional blow, different when you are talking about a beloved pet versus a food, but either way, those words, which seem simple on the face, are actually quite difficult. Quoting Dr. Dave Stukus, "Families told to get rid of their pets by their allergists find themselves a new allergist, not a new pet." And I know when James got his test results back, my second thought (after looking at the food) was to be relieved that he was not allergic to the dogs and cats.

Epi-Pens: Carry Them, Keep them Together

Obviously, a rabbit being easier to avoid than most allergens, it may seem like you don't need them with you always. There's a few reasons I would argue that with even a seemingly easy to avoid allergy, you always need your epi-pens with you:

1. It can take months for your environment to be fully clean of the proteins from pet, even with thorough cleaning. Regarding mammalian proteins in an article about anaphylaxis from a horse allergy: "It is necessary to remember that the allergen levels decrease slowly over several months after pet removal." Gao et al, Wao Journal, Aug. 2009
2. Other people own pets and allergic proteins are clingy. I, myself, have experienced going to the Urgent Care (not allergy related) only to be treated from the door way because the doctor's pet allergies were too severe to treat me. Note to self: Use tape roller before heading to Urgent Care?
3. There is always the possibility that instead of the rabbit, the reaction was caused by the hay the rabbit was being fed. Grass (hay being a form of grass) is actually a more common allergy than rabbit. And a more common trigger.

Here is a link for a co-pay coupon for the Epi-pen.

See a Board-Certified Allergist

An allergist will be able to sort through the history and do the testing to determine what the allergy actually is. He will also be able to give an emergency action plan, clear for the entire family.

Rodent Allergies

This is information I found specific to rodent allergies.

What information would you share for someone newly diagnosed?

 

Where in the World is My Epi?

Kids with Food Allergies is running a year long campaign to encourage people to always have their epi-pens (or epinephrine device of choice with them). By uploading a picture with the #WhereInTheWorldIsMyEpinephrine at a platform of your choice (see details here ), you can be entered into a monthly drawing for $400 worth of products.

Here's a collection of pictures from our recent trip. Can you see his epi-pens in these pictures? They are visible, although I don't think visible enough for the contest (which is fine, James would not want them that visible).

The bottom two pictures were taken at Zion National Park. We took a shuttle on the way back and here's what we heard over the radio as we went (name and age changed for privacy because I, frankly, can't believe they gave that information out over the radio when it wasn't private):

We have a 15 year old girl, Trixie, in anaphylactic shock. Epi has been given. Coming out of the Narrows.

What did she react to?

In my head: Who the hell cares?

I don't know. She has been given an epi-pen. Her throat just started closing up. We need an ambulance.

But, was she stung by something? Did she eat something?

In my head again: Who the hell cares?

James: "Why isn't the driver calling for help?" 

Our driver had not been using the radio, this was all overheard, so we explained that he would hear what was going on throughout the park, but that others were helping.

James: "Someone needs to help her."

We're out of the Narrows now. 

Is she stable?

In my head: Finally!

Yes, she's stable. She's walking.

Ambulance and rangers are on their way.

And at this point, they pass our shuttle.

This is the Narrows.

She was smart, she carried her epi-pen. I am still thinking of her everyday and hoping she is ok.

Where in the world is your epinephrine?