3.14.2013

The never-ending allergy "adventure"

It's been about 18 months since Olivia was first diagnosed with allergies - both "seasonal" and food. When we found out that she had the "seasonal" allergies (really, they're year round...trees, pollen, grass, weeds, mold, dogs, cats) we also found out that she was allergic to peanuts and sesame seeds. And the allergist said to also avoid tree nuts as a peanut allergy almost always guarantees an allergy to tree nuts.

So for the past 18 months she has endured two scratch tests, allergy shots every single week, and an almost daily litany of "no, you can't eat that" because of her food allergies.

I immediately became that mom - the one who reads every label in the grocery store, the one who frets about her child going to a friend's birthday party because there might be a cross-contamination risk with the food, the mom who worries all the time about what her child is - or isn't - eating.

Yesterday was Olivia's second scratch test - she had been receiving "maintenance" shots for a year and they determined she was ready to be re-tested on all the original allergens from 18 months ago. For the non-food allergens her numbers were mixed: dogs and cats went down, mold went up, corn pollen suddenly appeared, and ragweed went down. So, a mix of good and bad.

And then the food allergens. All showed as a ZERO. That's right. According to the skin test, Olivia no longer has any food allergies. I asked the physician assistant and the nurse how this was possible after ONLY 18 months and their best answer? "It happens."

That was it.
"It happens."

Well, being THAT mom...that answer wasn't good enough for me. While I understand that it CAN happen - kids can grow out of food allergies - the likelihood of growing out of a peanut allergy is only about 20 percent. And while I would LOVE for my child to be part of that 20 percent....I want to be ABSOLUTELY POSITIVE that she really has "grown out of" the allergies.

The PA and the nurse seemed totally content with just sending us off on our merry way without a second thought. Until I pushed back (a lot) and demanded a better answer than the one they were giving. ("Hey we have a new Pope! It's a food allergy miracle!" NOT.)

Finally the PA asked about the first skin test 18 months ago and how quickly the peanut and sesame allergy appeared. I told her it was almost an immediate reaction and her response was ... "Oh, that DOES make a difference."

Now we're getting somewhere.
Maybe I'm not CRAZY.

The PA decided that she really DID need more answers and a better confirmation than just the scratch test. So, she ordered a blood test for all nuts and sesame. The blood test is often much more "sensitive" than a scratch test, so if it shows any nut allergens the next step will be a food challenge - where they would have Olivia eat the allergen-inducing food in a controlled medical environment.

Now some of you might be thinking I should just be happy that Olivia was "cured" of her peanut allergy. You might be thinking "damn, don't you want her to be better?" And you might be thinking I'm overreacting to all of this and should just LET IT GO.

But it's not that simple.

YES. I do want her to be better. I want her to feel "normal" and not feel singled out when it comes to food. I wish I could erase the last 18 months and make her forget all the tears that have been shed over foods she couldn't eat. I wish we could go out to dinner and not have to tell the waitress "we have a peanut and sesame allergy." I wish we didn't have to carry EpiPens with us everywhere we go. I wish I didn't have to tell her "no" all the time when it comes to food.

And YES, I am hoping that her allergy really IS gone. I am hoping that somehow she "won the allergy lottery" (as someone said to me in a forum yesterday) and is better. I hope this blood test shows no allergy to nuts or sesame.

But I'm not willing to risk her health and safety and just rely on a scratch test. I'm not willing to just say "OK. She's cured! Now let's eat some peanut butter!" I'm not willing to just chalk it up to luck or a possible faulty test 18 months ago. It's just not worth the risk. And if you're not an allergy parent and don't worry about food all the time like I do, maybe you just don't get it.

And so...we're doing the blood test and heading back to the allergist in two weeks for the results. And yes, I am hoping for the best. I am hoping that maybe the test 18 months ago was just a fluke and she really is better - but I'm also a realist and know that yesterday's test could be wrong and we could still be dealing with food allergies. So, if you could...keep your fingers crossed for a good test result.

2 comments:

  1. As someone who has spent a lifetime dealing with allergies-both the seasonal and food allergies I hope Olivia is done with them. I know first hand how horrible it is. I get the stares, the confusion the everything else that comes with it. I would love to say that I have grown out of mine. But I am the no go category...I have lost that lottery...

    And I hope that Olivia may be able to enjoy all the foods that she can...

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  2. Aleisha: Thank you! I am hoping that we get good results too...I just want to be 100% certain about it, which is why we're doing the blood test (and possibly a food challenge). I've seen too many stories about false positives and bad testing serum to just take it as a 'food allergy miracle' :)

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