Tuesday, February 3, 2015

Allergy Update - January 2015

I have dreaded writing this post for the past 2 weeks.  Whenever  I've updated allergy information on the blog over the past two years, we've always had good news.  Georgia has done amazingly well on all of her food challenges and we haven't had any sort of reactions or mystery hives in a long time.  We've had an epi-pen/auvi-q prescription for almost 3 years now and we've never had to use it.  It almost makes us complacent at times.  So, perhaps this latest news is the sort of kick in the butt that I/we needed to stay on guard at all times.

Back in December, I posted about Georgia going for her latest round of blood work in preparation for her annual winter appointment with her allergist.  During this round of blood work, she had the "newest" test available for peanut allergy sufferers.  The test basically breaks down the peanut allergy into different proteins and determines which proteins the person is reacting to in peanuts and peanut products.  You can read a much more detailed description HERE.  In short, you don't want to be reactive to proteins 1, 2 (especially 2) or 3.  Reactions to proteins 8 and 9 are more indicative of a reaction that most likely would not result in having to use an epi-pen.  We were really, really, really hoping that this test gave us some good news.  We were rooting on proteins 8 and 9.

Unfortunately, we received the worst news possible at the appointment.  When our allergist was reviewing our results, her exact words were, "Well, this is bad."  Those words will stick with me for a very long time.  I did my best to hold it together during the appointment and I think I did a pretty good job.  But, I'm heartbroken.  There really is no other way to say it or write it.  I'm devastated.  I'm a nervous wreck.  I sobbed my ugly cry for hours when we got home.  I just want to surround her in bubble wrap and never let her leave my sight.  The fact that kindergarten is now only a short year and a half away makes me sick to my stomach.  I can't even begin to think about her teenage years and how this is going to impact her then.  My only hope at this point is that a cure or some form of a reliable treatment gets invented before she heads off to college in 15 years.  OR... she might be quite embarrassed to have her Mom as her freshmen roommate.

The actual numbers...
  • Georgia continues to test negative to being allergic to egg yolk (as always)
  • Georgia's egg white numbers continue to drop (in a good way).  Very slowly, but I like the trend.  
    • 2015 - 1.35
    • 2014 - 1.48
    • 2013 - 5.34
    • 2012 - 16.7
  • Georgia's dairy numbers increased slightly (in a bad way), but since she is still tolerating baked dairy and baked cheese quite well, the doctor wasn't too concerned with that move in the wrong direction since it was so minor.
    • 2015 - 10.2
    • 2014 - 9.0
    • 2013 - 14.4
    • 2012 - 16
  • For the first time ever, Georgia tested positive to almonds.  It was very slight, but still an increase from past years.
    • 2015 - 0.64
    • 2014 - Less then 0.35 (aka - negative)
  • Georgia continued to test negative to pecans, hazelnut, pistachio, walnut and cashew.
  • Georgia's peanut number increased in a very bad way.
    • 2015 - 100+ (aka - too high to even measure)
    • 2014 - 30
    • 2013 - 38.4
    • 2012 - 12.6
My heart was already pumping just seeing that 100+ for peanuts as the allergist pulled out the peanut component test results.  Remember - protein 1, 2, and 3 are BAD and protein 2 is the absolute worst!!  Proteins 8 and 9 aren't so bad and may be more indicative of an allergy that might result more in hives/itchiness.  The numbers:
  • Ara h 2 - 70.8
  • Ara h 1 - 4.14
  • Ara h 3 - 1.41
  • Ara h 9 - Less then 0.10 (aka - negative)
  • Ara h 8 - Less than 0.10 (aka - negative)
In short, Georgia needs to have her epi-pen with her at all times - at school, at home, at the pool, at the park, at friends' houses, on a school bus, on a field trip, at the grocery store, in the car, at the pumpkin patch, while picking apples, at the gas station, etc.  She can never be without her epi-pen.  Most likely, she will need to have that epi-pen with her for the remainder of her life.  We have to be very careful with peanut, peanut butter and even traces or "may contain" statements with peanuts.  Essentially, there will be no peanut products in this house... ever.  She can never touch a peanut... ever.  She cannot touch anything that is baked with peanuts... ever.  She should never touch anything that "may contain" a trace amount of peanuts... ever.

Fairly certain at this point the allergist could tell that I was completely overwhelmed with the news.  As she reminded me, "This doesn't change much.  We knew she had a peanut allergy."  True.  Very true.  We've always been good about making sure the epi-pen is on us at all times no matter where we are - house, school, pool, car, travel, etc.  Over the next few years, Georgia is going to have to learn to carry her own set as well.  I'll have to contact her school before she starts kindergarten so we can chat about the plan there as well.  She is going to have to be a very, very responsible 5 year old.  For now, we continue to remind her that she is NOT to eat anything given to her that has not been "cleared" by Nick or myself.  We send in all of her food to daycare and clear their snacks ahead of time for class.

Just like last year, the doctor wanted to do a skin test while we were in the office.  Blood work can only give us so much information and there is a history of blood work not always being the best indicators of a reaction.  The peanut numbers were way too high to expose her skin, but the doctor tested dairy, egg, and tree nuts.  Georgia cried hysterically as I held her so they could prick her back.  Never fun.

Watching some "Paw Patrol" while we waited for the skin results on her back

Just like last year, the skin testing had some wonky results.  Last year, we had to "throw out" all the information because her neutral even tested positive (aka - she has a lot of histamine in her system on a daily basis).  The numbers:

2015 - Skin tested positive to egg, milk, almonds and pistachios.  Negative to cashew, walnut, and pecan.
2014 - Skin tested positive to egg, milk, walnut and pistachios.  Negative to pineapple, cashew, almond and pecan.

Talk about confusing.  In blood work, she is not allergic to pistachios.  Yet, she reacts to them on her skin AND she has reacted to them on her skin for two years in a row.  The egg and milk are not a surprise since her blood work also shows a reaction.  Last year, she showed an allergy on her skin to walnuts.  This year, that was negative.  Last year, she didn't show an allergy to almonds.  This year, both her blood work and her skin test showed a positive.  Confused yet?  Welcome to my world.

Next steps...
1 - Avoid peanuts LIKE THE PLAGUE.  
2 - Food challenge to egg at the end of February.  She has already passed a baked egg challenge back in 2013.  Now, we're going to try "less baked" egg (aka - French toast).  Since Georgia regularly eats pancakes and waffles with eggs in them, we're hoping for an easy pass on this test.
3 - Almond challenge in March.  That one gets my heart thumping.  Her numbers are low and her skin reaction was minor.  I have to remind myself that both her egg and milk numbers are higher and she can tolerate those in baked form.  But, the thought of having her drink almond milk sends my blood pressure through the roof.  
**Essentially, the allergist would love to rule out tree nuts and just have to focus on the peanuts as we approach school age.  However, she's not sure what to do with those darn pistachios at this point.**

Overall, not a great appointment.  However, I love our allergist and I trust her.  She could not have been more kind and said all the right things.  She reminded me that we are doing an amazing job on a daily basis and that is why we've never had to rush Georgia to an ER or inject her with an epi-pen yet.  But we have to remain vigilant.  My mind has already gone to Def-Con 1000.

As always, thank you to our family and friends for understanding and helping us through this journey.  We are so lucky to have met so many wonderful people who go out of their way for our kid on a daily basis.  We hosted a party at our house this weekend and several guests emailed/text me to ask about ingredients ahead of time, which I always appreciate (I've been known to get a little watery eyed when people go out of their way to make sure they keep my kid safe).  I shared this news with her teachers via email when we got home and by the time I picked her up the next day, I swear the entire daycare knew about it. As one of her teachers said, "I just want to post a sign that says - if you ate peanut butter for breakfast - don't go near Georgia.  Do not touch her.  Do not talk to her.  Do not look at her.  Go brush you teeth and wash your hands again."  AMEN! 

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