One Year With an Epi-Pen

Jed's Allergy Kit...

Jed’s Allergy Kit…

This week is just an Anniversary Week for us, and kick-starting it is today – July 17, 2013 is One Year we’ve been the parents of a child in need of an Epi-Pen.

Last year on this day, I took Jed to the allergist to be re-tested for his allergies. Based on what she had told us on previous appointments, we were fully expecting that he would have outgrown all of his allergies by then.

So I was in high spirits when we entered the room.

She gave him the prick test, and I could see right away that one of the pricks was bigger, redder, and angrier than looked healthy.

Sure enough, she confirmed that his egg allergy had not gone away, as expected. In fact, it had gotten worse. And she wrote us a prescription for an Epi-pen, gave us instruction sheets on how to treat him in case, and sent me – head reeling – on my way.

I was suddenly very afraid; we’d been dealing with an IgE Egg for almost two years, of course, not to mention dairy and soy intolerances, but this…THIS was far more serious and scary. An Epi-pen! Dear me!

Fortunately, this year with an Epi-pen has not been as scary as I thought it would be. Of course, that could be because we’ve had FPIES to deal with, which is – maybe not scarier – but certainly more stressful on a daily basis.

We haven’t had to use our Epi-pen. (Yet.) (knock wood) We HAVE had to pump him full of dipenhydramine on occasion to stave off a severe reaction; once to peanuts, which he didn’t test positive for at all! (That turned out to be a cross-reactivity between peanuts and birch pollen, we suspect. Still, we now avoid peanuts as if he had tested positive for them. I never know when birch pollen is hanging around to make peanuts dangerous!)

Those encounters were scary enough! It’s not a pleasant thing to watch your baby boy turn bright red with hives almost instantly from head to toe. It’s not fun to realize your sweet little boy is using his limited communication skills to convey that he wants you to put Neosporin on his tongue because it’s swelling and itching so badly.

I know we could have it much worse, IgE-wise. I know many families whose children are severely anaphylactic to numerous items, making it potentially deadly for them to ever leave the house or eat anything they didn’t prepare themselves.

But one year with an Epi-pen has been not fun for us in every possible way. Whether one or twenty triggers, having an Epi-pen means my child may fight for life from one moment to the next based on one single bite of food.

And people wonder why we never leave the house, and why I’m paranoid about anyone babysitting my kids!

Wonder no more, folks. It’s because we have an Epi-pen, and live in a world with people like this

And I happen to love my children fiercely, and want them to, you know, stay alive.

The reason people are scared to babysit my kids: compounded dipenhydramine, scissors to cut open the capsules, syringe to administer the dose, and the Epi-pen for reactions too severe for dipenhydramine. We carry this with us everywhere.

The reason people are scared to babysit my kids: compounded dipenhydramine, scissors to cut open the capsules, syringe to administer the dose, and the Epi-pens for reactions too severe for dipenhydramine. We carry this with us everywhere.

Having an Epi-pen has made me a different mother than I thought I would be. Knowing how “helicopterish” I must be about food for my kiddos made me start being FAR more Free-Range in other parenting aspects.

I let Jed do things other kids his age aren’t allowed to do; climbing on tall objects, using butter knives at the dinner table, exploring the world and talking to everyone. Kids have to have SOME independence, after all…and mine sure as shootin’ aren’t going to get it via their food choices for some time to come!

So there’s a bright side to everything, I guess. It’s just…I don’t know if this bright side is enough to offset the cloudy darkness of living with an Epi-pen in our back pockets at every moment.

Do you live with an Epi-pen? How do you handle the fear for your kiddos?

 

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