Monday, December 29, 2014

A few lab numbers to convince your every acquaintance of your newfound madness

Okay, we’re a little crazy about this stuff.

First of all, our kid has never had an anaphylactic reaction to peanuts.  But we’re still pretty crazy paranoid – and for good reason.  The timeline:
  • PBJ @ 1 year old. Small rash by mouth with PBJ #2. Stopped peanuts.
  • Small exposure in frozen yogurt @ 18 mo. Benadryl treatment for whole body rash.
  • Allergist appointment (knowing that subsequent exposures to an allergen can be much worse)
  • Back scratch test with peanuts and other nuts - aka worst hour of our lives.
  • Labs. 
  • Wait.
  • More labs.
  • Told in terms not to be misunderstood to have a completely peanut free house and life.  Oh yeah, here’s some epinephrine for emergencies. Good luck.

And so far, we’ve had good luck.  Thank goodness.  And how long can that luck last going into pre-school and then elementary school and on to the rest of her life? 

~ I don’t want to know the answer to that question -- but I'm guessing it's not long enough ~

So how ‘bout those labs hu?  The labs here are peanut IgE levels.  You have some IgE too.  It’s an antibody -- part of your immune system.  It’s a good thing to have antibodies.  It’s a great thing!  And so are camp fires and marshmallows until it misbehaves and burns 1,500,000 acres in a forest fire.   IgE is the antibody isotype that’s notably speedy – which is why you can see allergic reactions happen so fast and furious.  If IgE “sees” something it thinks shouldn’t be there, it attacks, --> meaning it binds to Mast cells, which go *boom*, histamines are released, and wham: you have a runny nose, or itchy eyes, or a rash, or … oh yeah, a fatal drop in blood pressure or swelling throat and inability to breathe (if you get enough of them involved).  

Little things like that.

Oh…. Yeah … *THAT’S* why we’re a little crazy about this stuff. Rrrrrright.  I remember.

So since IgE is the problem antibody, that’s why they look at peanut IgE levels.  First, what’s “normal”?  I take this info from the most recent ARUP allergy lab report:
And here’s what we’ve been working with in our kid:

Date
IgE level (kU/L)
Allergy Clinic Response and Instructions
January 2013
8.8
Definitely allergic.  Completely avoid peanuts.  Epi pen if needed.
August 2013
26.5
More definitely allergic.  Completely avoid peanuts … still.  And make sure you keep that epi-pen with her at all times.  Anything 15 or above means essentially a 100% chance of a very bad reaction if ingested.
October 2014
>100 (they apparently stop measuring at this point)
[By this time we had switched to the new allergy clinic in pursuit of this OIT treatment]

Did you see that?  Look again.  Up there.  Her first level of 8.8 was classified as “Class 3” out of 4, or “High”, and the 26.5, or a “Class 4” is as high as they care to classify it.  Her most recent reading, again, is greater than 100.  Meaning, the lab stopped counting… there’s no need to continue counting that high.

>100” is bigger than the “very high” 26.4 last time I checked.  From the lab report: 

Oh… *THAT’S* why I’m a little crazy about this stuff.

I should note here that a higher IgE level doesn’t necessarily or perfectly correlate to the severity of a reaction, but it does correlate with the likelihood of having a reaction.  In other words, you can’t exactly say based on lab work alone exactly how bad a reaction might be, but we know that she will definitely react, and according to the August 2013 lab work (and others since), we’ve been told that it’s essentially a 100% chance of a “very bad reaction”.
So has she ever had an anaphylactic reaction? 
                            Nope.   
Do we know how bad she will react? 
                            Nope.   
Does that matter or change anything for me? 
                            Nope. 
If you’re interested, the full report on the most recent lab work is here (drilled down into various components).  The very last paragraph on the report in conjunction with the 3 red lines above it is also terrifying: “If any one of these 4 components is positive, the patient has a high risk of systemic allergic reaction…”  Yeah, 3 out of the 4 bad-guys are positive, and one of them, again, is off the scale.

So um, do you see why I’m a little crazy about this stuff yet?

We’re *SO* so glad that we have the option to do this oral immunotherapy treatment for her allergy.
  
So again … this isn’t about being able to have peanut butter cookies around the house again (though that’s certainly a benefit).  It’s not about no longer having to constantly remind everyone she comes in contact with about her allergy (though we’re looking forward to that too).  It’s about not getting a phone call from a school or hospital in her first week of Kindergarten to tell us exactly how bad the reaction is.  

Fingers still crossed that this peanut oral immunotherapy works.

I hope I never find out how bad her reactions would have been.  




3 comments:

  1. And, when it works (we pray), then you will likely have to do it again with Calvin? Katie, are your other allergic nieces and nephews THAT bad?

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  2. My grandma was telling me today that one of my cousins did this program. She is 4. She officially is not allergic to peanuts any more. This is an amazing program!!!

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  3. I'm sure Calvin has a higher chance of having allergies given that his sibling has severe allergies - I've been watching him carefully every time I introduce new foods, but he hasn't seemed to have any reactions yet (except for milk, which I'm hoping he grows out of, as that's a common problem for babies under a year old). One niece has grown out of her peanut allergy (she's almost 19). One nephew throws up when he eats peanuts, and another niece's lip seriously blew up when she accidentally had a nibble of a peanut butter cookie a couple years ago. My youngest niece on my side has shown some rashy reactions as well, so she may be allergic. Neither of my sisters is particularly interested in their blood work, however, so I have no idea how the numbers compare. I hope nothing tragic happens to them.

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