Monday, September 12, 2011

Our Story - Journey to the Great Immune Unknown

Starting anything new is the hardest part... except for maybe maintaining something, but I'll work on the starting part first :).

I've been talking for at least 6 months now that I should start a blog about food allergies.  Needless to say, after a great lunch with old friends, a fortune cookie finally convinced me that yes, now is the time, just make the first post! 

Me in the lab, photo courtesy A. Balkowiec
My goal with this blog is two-fold.  Like many blogs out there, I strive to help others become more aware of food allergies and just how life-changing food allergies truly are.  Second and more importantly, I hope to use my talents to benefit others who either suffer from or have friends/family members who suffer from food allergies.    My somewhat unique perspective is that I am a Ph.D.scientist.  There are so many great blogs out there raising awareness and helping people cope with food allergies.   I also hope to do this, but my aim is to intertwine the emotional reality of living with food allergies and the science behind the immune system and what goes awry .  I've been trained to design and execute scientific studies.  I can get through scientific literature without my brain hurting (too much!).  I hope to take these skills to cut through the jargon and translate the science into something most normal human beings can comprehend.  I strive to separate fact from fiction because there is definitely a lot of "myth" out there.  My disclaimer is that I am a neuroscientist (scientist who studies the brain) and only at the trailhead of understanding the immune system/food allergy.  So really, you will be joining me on the trail to a better understanding of the immune system and the currently unseen destination of real medical solutions to curing food allergies once and for all.




Why I became so interested in blogging about food allergies is a personal journey and one that I never saw coming...

Our family life prior to December 2009, like many typical families, was a bit chaotic, but mostly a happy, uneventful chaotic.  My husband, Jason, worked for a major computer hardware company, I was in the midst of doing neuroscience research to complete a Ph.D., and our son, JR, was developing into quite the 1.5 year old little man!  This included many forays into the world of trying new and different foods.  Periodically, we would get a call from JR's daycare about him throwing up and getting a little rashy in response to eating certain foods (waffles, canned peaches, peas, tomato soup? That seemed odd!)  Our internal parent alarms started going off, yet it seemed relatively harmless.  We talked to our doctor and nurses several times, and they weren't terribly concerned either.  These "reactions" never seemed very consistent.  We were led to believe that sometimes kids trying a new food will gag at the texture and throw up.  If he had a little contact rash, we gave benadryl, and all was fine... we really weren't dealing with anything serious, right? To allay our fears, our doctor prescribed an epi-pen (the life-saving, auto-injecting drug, epinephrine, for severe food reactions) "just in case." 
Epi-pen




At the beginning of Dec 2009, JR sampled some new pistachio-containing crackers at home.  Internally, I felt a bit edgy about trying nuts, yet he really wanted to eat what we were eating, so we didn't hold back.  Within 5 minutes, JR was violently throwing up and developing hives all over his skin. Since this mirrored many of the "minor" things we or daycare observed, we didn't think much of it.  We got him into the bathtub to get cleaned up and gave him some benadryl.  Yet, this was different.  Scary different.  He was talking, but seemed very out of it, almost faint.  In hindsight, his voice became more high-pitched (e.g. throat constriction).  When we finished in the bathtub, we got him to his room, he was stumbling a bit (e.g. drop in blood pressure, which is VERY BAD in hindsight)!  We considered injecting the epi-pen and calling 911 when miraculously, the benadryl must have kicked in.  He was fine.  Needless to say, after talking with our doctor, we were at an allergist ASAP!  It all happened so fast, 20 minutes or so from the time he ate the offending cracker to when the benadryl kicked in.  Indeed, we had witnessed an anaphylactic reaction - the life-threatening kind involving multiple organ systems - e.g. gastro-intestinal (throwing-up), skin (hives), cardiovascular/nervous system (drop in blood pressure).  Knowing what we know now, we should have used the epi-pen our doctor prescribed for that "just in case" scenario.

At the allergist, our poor guy was subject to a skin prick test, where they inject small amounts of food proteins into the skin to see if a welt forms in response to the food protein.  In total, he had ~15 different foods tested that day.  This was based on some of the on and off reports from daycare and at home from him throwing up or getting rashy after eating/contacting something.   After they injected, my husband and I watched as JR's back swelled with little welts at nearly all injection sites within minutes.  We assumed it was normal to have some response since there were a few very large welts developing, while many remained "relatively small."  When the nurse returned, her reaction shocked us!  JR was allergic to all but one item tested (onions of all things)!  I think we nearly fell out of our chairs.

Skin prick test, image source - http://www.mymedpax.com/skin-prick-testing-ins-and-outs/
 From this day forward, we commenced our journey into life with food allergies.  Our allergist was a bonafide sleuth in pinning down JR's allergies and with our help, the several others that developed in the couple of months following the pistachio cracker incident.  Suddenly, I was forced to push all of my emotions aside about trying new foods and my gut-feelings on what may or may not be an allergen and apply the same scientific rigor I used in my professional life to my son's allergies.  Talk about absolute heartache!  Because his allergies were so numerous and all of those processed foods that we ate contained at least 20 different ingredients (many being corn and soy derived!), it became obvious we needed to start at the ground up (aka - I learned how to really cook - probably on par with my great-grandmother's generation, but definitely not as good!).

JR's known allergies:  Peanuts, 6 different tree nuts, eggs (yolk and white), CORN, SOY, peas, tomatoes, peppers, oranges, apples, pears, sesame seed, raspberry, flax, and figs.  Luckily, in the past year he appears to have outgrown turkey(?!!) and cod.  CORN and SOY are in bold because these will be highlighted in future posts as the bane of our existence! 

We eliminated everything from JR's diet and worked our way up from scratch, literally!  We made our own bread with the simplest of ingredients - wheat flour, water, salt, cane sugar, and yeast.  JR was fine.  Then we added in milk.  All was good (yes, I know the great irony of ALL of these allergies is that two of the most allergenic foods - milk and wheat - were completely ok).  We went on like this for months - in fact we are still doing it - only one new ingredient added at a time is an absolute rule.  In a processed food world, this meant making most things from scratch - e.g. bread, hamburger buns, mac 'n cheese, etc.  This was rigorous and emotionally challenging.  Nothing in my analytical nature can explain the emotional attachment we humans have regarding food and being forced to uproot your way of life surrounding food.

I've learned so much in the past year, and JR continues to thrive in spite of some obvious nutritional limitations.  Now that I've finished my Ph.D., I am on a quest to do something about this ever-growing problem of food allergies.  First, I need to understand the problem better.  What are the major questions plaguing scientists/medical doctors?  What do we still not understand in order to bring the immune system back in check, e.g. tolerating harmless foods or even reversing autoimmune disorders like multiple sclerosis, rhumatoid arthritis or lupus?  I can tell you from personal experience that the only absolute advice coming from the medical community regarding food allergies is that complete avoidance of offending foods is the only way to ensure that no reaction will occur.  Almost every other question you can ask results in highly differing opinions depending on whom you ask and a whole lot of hand waving.  The scientific/medical community truly understands very little of this growing problem, and meanwhile affected individuals are at a loss with only the hope of "many children will outgrow their food allergies."  Unfortunately, the statistics on outgrowing peanut (~20%)/tree nut (~10%) allergies, which are among the most life-threatening of allergies, is dismal.  WE MUST DO SOMETHING!

3 comments:

  1. Thanks for sharing your story with us. I look forward to your future posts.

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  2. I can't imagine how scary this is and I know a lot of people (myself included at times) don't take food allergies very seriously. But when it's such a frightening reaction from your little loved one, I'm sure that makes the lack of information and explanation even more frustrating. Looking forward to following you on this journey and learning a lot along the way.

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  3. Thanks so much! I hope it will be helpful for many :)

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