Thursday, May 29, 2014

a dose of reality

It wasn't until our daughter went to the ER for the first time for an allergic reaction that I really felt what it was like to be completely helpless as a parent. The fear was paralyzing; I couldn't think straight. I remember racing to the car with my baby in arms completely naked. She didn't even have a diaper on. It never even occurred to me to use the Epipen. The one tool I have to keep my baby safe and I'm afraid of it. How awful is that?

If you don't have food allergies, it's easy to assume they're not a big deal or that sufferers are just being difficult or "special." 

I can say my daughter was not being difficult when, not even a year old, she broke out in hives after eating scrambled eggs. She was not trying to be special when her lips swelled up after mistakenly eating nuts in a sauce at a restaurant or when she ate an energy bar packed with not one but three offenders: almonds, cashews and flax (we didn't know about her allergies at the time).

I've always been casual about health and people's "issues" with diets and food. I tend to not take them seriously, and so even though we carry Epipens and have been through more bottles of Benedryl than I care to admit, I'm still grappling with what it means to have a child with a disability around food. Not only a disability, but one that is potentially deadly. 

Ever since her food allergy diagnosis and we picked up her first Epipens at the pharmacy, there's been this lump of fear in the back of my throat that Amelia will go into anaphylaxis and I will be paralyzed and not know what to do. 

I don't do well with the unknown, the unpredictable or with things I don't understand. Like, why was she able to eat almond butter so many times before and not react? Why did she not react the time my mother mistakenly fed her flax that was lurking in a butter spread? Why did she break out in hives inexplicably after eating strawberries and carrots at school? She is not allergic to those foods.

I've been thinking about Amelia's allergies more this week, because we had our annual visit to the allergist recently and she had to be retested for her known allergies as well as new ones.

They pricked her back over and over and half of the pricks turned into hives. Amelia was screaming and trying to scratch her itchy back. The cashew one was the biggest. Eggs didn't make a hive at all.

So the good news is Amelia can have eggs now. She's grown out of that allergy. But we discovered she has environmental allergies as well: cats, pollen. We were advised to get rid of our cats and then scrub down the bedroom. Get rid of our cats? They are part of our family. But keeping them could increase her risk of developing asthma.

As a parent, we make decisions every day that are subject to second-guessing. Breast feed or not, work or stay at home, organic or not. But these are not life and death decisions. When it comes to your child's health, are you a criminal for being lax? Keep the cats and risk asthma. Go to a restaurant and risk cross contamination. Give her a piece of chocolate that "may contain traces of nuts"?

I want to care for my child, but I also don't want her to live life feeling as though she can't enjoy it. But is the risk worth it? I don't know enough yet to feel as though I have the right answer. I'm still new at this thing called parenting.
What would you do?

Allergy prick test.

In the ER with puffy lips after eating hazelnuts.

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