Saturday, July 6, 2013

Allergy Testing Update - 3 Years Since Initial Testing

Well, I took my daughter to the allergist for her follow-up appointment and we got our orders for some more blood tests.  Even though I felt I learned the lesson I described in "Part 3" of my series of posts on food allergy blood testing, I just could not help myself from testing a few foods, before having my daughter try them.  I also re-tested some known allergens, so I could keep track of trends, over time.

Now, I know better than to get my hopes up too high and I am the first one to explain to people that the slight fluctuations of blood tests results really don't mean much, but I must say I was a bit pleased to see the drop in my daughter's values for peanut and milk.  I understand that these numbers are still high and that we can't even think of considering an allergist-supervised challenge, until they drop under 2 kU/L, or preferably <0.35, but let me just daydream here a bit and enjoy the downward trajectory of these numbers...

Another thing to note, is that you cannot usually compare values between different test types, performed by different labs, so I must state that the first 2 values for the peanut chart were done by Quest Diagnostics, the 3rd was done directly by Phadia, as part of the uKnow Molecular Allergy testing and the 4th was done by CPL Labs.  However, they are all Phadia ImmunoCAP tests.  The rise in numbers for both peanut and milk might have been because she had experienced anaphylaxis in between those two test points, and I've heard that can happen.  I'm just particularly struck by the big difference between her highest value and her most recent value.  Even if they were different labs, calibration differences would not be that far off, between two labs, performing the same kind of test, would they?  (I would welcome any input...)


For the milk values, again, I am struck by the drop, but still not in any way believing that this means anything, at this point.  Her numbers still have a long way to fall.  I guess I'm just looking for something to be positive about, but really, I know that even if the numbers went up, as they did at the second blood draw, that doesn't tell the whole story. 

Another (hopefully) promising thing I saw was that her Total IgE has dropped over time.  When tested at 18 months of age, it was 740.  When tested this time, at age 4 1/2, it was 393.  That's about a 47% drop.  Again, 393 is still way above the desired range of 60 or below, but we're moving in the right direction!

It's certainly a long waiting game...We're either waiting for tolerance to develop or a cure.  To quote some songs that come to mind: (comma added to the first song)
"You can't hurry, love
No, you just have to wait
You got to trust, give it time
No matter how long it takes"
... 
"The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part"

I'm going to cover the rest of the test results in a separate post, to keep my posts to a manageable size.  Thank you for reading and if you have any input/insights/comments, I'd love to read them, as always!  

9 comments:

  1. We've experienced a drop between blood tests (three years apart) and ended up challenging a few things as a result with success. They want me to do blood tests for the remaining allergens but when I talked it all out with Jenny initially she suggested that I only test what I feel I'd be okay challenging if the numbers came back indicating a challenge was okay. In other words, would I risk a hazelnut, for example, if the numbers told me I could? Or would I agonize just the same? So I think the tests are a tricky thing. Our allergist said a 40 for, say, wheat, is not the same as a 40 for peanuts so looking at a declining trend on a particular allergen can be useful but not always dispositive. I guess this is all to say I sympathize and have no idea what I'm talking about. :)

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  2. Yeah, I'm certainly not interested in a challenge, with her numbers being so high, but just wondering if it looks like an actual trend, or if it's "just my imagination, running away with me" (I'm just full of song references, today! ;)

    Thank you for sympathizing and sharing your thoughts. :)

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  3. My son's peanut is over 100! And the numbers rise with each test. His milk and eggs continue to fluctuate year to year. It's hard to imagine him actually outgrowing anything! I guess it's not impossible, but let's say I'm hoping for a cure!

    My daughter has only been tested once for peanuts. I'm not in any hurry to retest, I guess because I don't want to be discouraged by rising numbers for her too.

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    1. (((HUGS)))
      Yes, my main hopes are for a cure, too! It seems like it would be too much to wait on developing a tolerance to so many foods (milk, eggs, peanuts, tree nuts, flax, mustard...), so it would need to be something to take care of all of them, at once.

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  4. That cure can't come soon enough! Tell me more about the UKnowPeanut. Did you like that test. I'm seeing a few allergist in town stop giving the blood tests and only doing skin pricks.

    Now that may son is almost 15 I'm seeing patterns in relationship to growth spurts and puberty. Hormones seems to cause havoc wherever they go!

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    1. I agree - the best thing would be to have a cure!

      Yikes! I was just talking with a friend about how I wish that everyone got blood tests, just so we could have the data to review, over time. I know the results are not definitive with either test, but I just feel better working with numbers.

      I wrote a post about our experience with the uKnow test: (http://www.amazingandatopic.com/2012/07/uknow-peanut-component-test-results.html).

      It's much more detailed than just testing for f13 (whole peanut). Testing for "whole peanut" doesn't tell you the "whole" story, though, I suppose, neither does getting a value for Ara h 2. I am still very glad I had the test done and will do it, again, at some point, to see how the values change. Definitive or not, I still like the test and the additional information it provided.

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  5. Congrats on the downward trend! At least things are moving in the right direction! I am really looking forward on your write-up on the remaining foods that were tested.

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    1. Thanks! I'm waiting to speak to the allergist one more time, but that is taking longer than I expected. :/

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  6. Thank you for response. I hope your discussion goes well. Wishing you all the best!

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