Allergy testing: a mom’s fear of the unknown

GRAND RAPIDS, Mich.  (WOTV)-  The day my son was diagnosed with a life-threatening peanut allergy was pretty much the worst day of my life…. until now.  He is scheduled for an “oral peanut challenge” to see if his allergy still exists.  That sounds exciting right?  There is hope that the allergy is gone, I should be happy. But I’m anything but happy, in fact I’m terrified.  On Thursday my innocent three-year-old boy is going to ingest a food that could kill him, and I have to stand by and helplessly watch.

 

Our Allergy Story

 

You may be wondering what’s an: “oral allergy challenge” and what led us to this point.  Here’s how it works.  Our son was diagnosed with his life-threatening peanut allergy at the age of 18 months.  He took a single lick of my ice-cream cone on a hot June day and immediately broke out in hives on his neck.  We were sent to the allergist for testing and after a three-hour-long appointment and scratch test they confirmed he was allergic to peanuts and a laundry list of other environmental allergies including: our two dogs, grass, trees, mold ect.  I spent most of the appointment crying and emotional over the changes that were ahead.  We left with an epi-pen and strict instructions to clean out the cupboards and learn to read labels.

I should be happy.  I’m anything but happy, I’m terrified… my innocent three-year-old boy is going to ingest a food that could kill him and I have to stand by and helplessly watch.

Since then I’ve become a huge allergy advocate.  I’m constantly trying to educate family, friends, co-workers and anyone I meet about the seriousness of food allergies, label reading and how to be sympathetic, respectful and compassionate to allergy families. I’ve spent endless hours and days researching schools that are safe with no luck, I agonize over going out to eat or going to a family party that includes food.  I’m a total clinger mom who won’t let my son out of my sight because I’m afraid he’ll accidentally ingest something he shouldn’t.  I host most holidays and events so I can have total control over the menu making sure everything is safe and worry-free.

Now that my son is ready for school in the Fall, the doctors have decided to retest to see if his allergy had changed.  We had to take him to Helen DeVos Children’s Hospital for a blood test.  I almost walked out I was so nervous at the thought of having him poked and prodded.  Turns out he did okay and actually had more of meltdown afterward in the gift shop when he got two new toys instead of three.

I waited for the blood results to come back so we could see where he fell on the allergy spectrum.  I literally called the allergist two times a day for an entire week waiting for the results to be read and interpreted by the doctor.   When the phone rang they shared the great news that the results were negative for peanuts, all tree nuts and seeds.  Exciting right?!  It was except for the fact that the results aren’t 100% accurate.   However, it does mean we can move on to the oral challenge.

The Oral Allergy Challenge

My stomach is in knots just thinking about the oral challenge.  At the upcoming appointment (which is three-hours-long by the way), Easton will start with a scratch test on his back to see if he has a reaction.  The next step will be to dip a cotton swap into peanut butter and hold it in his inner cheek for 10 minutes (yah right).  Then if he passes that step he will move on to the final phase where he will start eating tiny bits of peanut butter on animal crackers while the doctors monitor him for a reaction.

The thought of this sends a shiver down my spine.  I keep picturing myself standing there, helpless watching and praying.  I don’t know how I’ll be able to dig deep enough into my soul to be strong enough to withstand this process, let alone be strong for him.  I have this horrible feeling in the pit of my stomach and I keep imagining it.  I feel like it’s going to be an out of body experience.  How can I possibly stomach the thought of giving him something that could cause his throat to swell shut?  I know this is part of the process.  I know I have to be strong and I know I will be, but I’ve never been so scared in my whole life.  The “what if’s” are going crazy in my head.

 I feel like it’s going to be an out of body experience.  How can I possibly stomach the thought of giving him something that could cause his throat to swell shut?

It’s hard to picture the positives.  In an ideal world I pray that he will pass his challenge and I can send him to a birthday party or a friend’s sleepover without losing sleep.  I long for the day I can take him out for ice cream (something he’s never had), or to get him the donut he’s always longed for that’s covered it delicious sprinkles and frosting.  I’d love to be able to whip him up a peanut butter sandwich or let him try a candy bar.  I’d love to drop him off at school/daycare and not panic all day wondering if the child he’s sharing toys with has a smudge of peanut butter residue left on their fingers.   Maybe soon we will be able to do just that….

I’m not getting my hopes up for the test.  We’ve learned to live a nut-free lifestyle and continue to educate and advocate everywhere we go.  Here’s to hoping it goes better than we all think.  Fingers crossed.

PART 2: Allergy testing: Beating the Odds

Resources for Food Allergies:

F.A.R.E.: Food Allergy Research and Education

How to read a label

Food allergy 101 (the basics)

Support for parents

Safe Snack Guide

 

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