Friday, September 21, 2012

If you're going to San Francisco...

be sure to bring the kitchen sink.  Okay this may be a slight exaggeration, but this post is entirely about our first real family vacation since dealing with multiple food allergies.

Quite frankly, if I had given it more thought,I probably would have rationalized my way out of it because the challenges were "too great."  Since I am writing in the past tense and a post about a failed family vacation isn't terribly interesting blog material, it is safe to say we actually pulled it off... successfully!  May our little journey bring you hope.

Vacation planning timeline:
3 weeks ago:  Jason finds out he will be jetting to San Francisco to present at a conference.

2 weeks and 6 days ago:  I work myself into a tizzy, " Wouldn't it be cool if we (I, JR and Luke) could join you (Jason) after your conference is done?!  A real family vacation!"

2 weeks and 5 days ago - 10 pm:  Research airfare between Portland and San Francisco.  Wow, it's not that bad!  Airfare booked.

2 weeks and 4 days ago - 1 am:  Can't sleep as I repeatedly say the phrase, "What did I just do?!!"  Wait, how are we going to pull this off?  Food?  In an unfamiliar city?  With no immediate friends or family?  Oh ya, and I have to make it to the airport, onto a plane for a 2 hour flight with both JR (4 years old) and Luke (7 months old), by myself?!  Oh, and JR has a bit of a life-threatening allergy to tree nuts and peanuts among other things?  What kind of mother am I?!

That's right.  I'm one dura mater to pull this off by myself!  Google dura mater if you don't get the  horrible attempt at humorous neuro-geek speak.

Like so many parents out there, to my core, I just want some sense of normalcy.  I want my children to experience all the great things that this world has to offer because there are just too many for one lifetime.  With this in mind, I pushed aside my fears (mostly) and went into planning mode.  How can we solve this food problem while staying in a hotel, far away from home, and eating at restaurants isn't a viable option?  Side note - for us, JR's allergy to corn and soy is a minefield.  We stopped trying to find safe foods at restaurants a long time ago.

To make a long story short, in order to pull it off, we brought a cooler with icepacks containing a few of JR's favorite food options.  TSA got a bit persnickety on the way back, but here is me not caring :).  The great thing is that the cooler with ice packs served us well for our entire trip!  It was a great asset for taking lunch on the go.

The other key piece is that we stayed in a business traveler's hotel, complete with a pre-equipped kitchenette.  I also made sure that the first night we arrived, we found a Trader Joe's, which has many of the familiar foods that are safe for us.  We bought safe food for JR, and of course a couple of bottles of wine and seasonal beer may have ended up in the cart to boot.

I brought along ziploc bags filled with standard spices (salt, pepper, garlic powder, onion powder, sugar, and a cinnamon/sugar mix for breakfasts).  My intention was definitely not gourmet meals, so you may want to forgo the oregano - I hear the TSA may not like that.  The great thing is that the bags pack nice and flat in your suitcase and the cinnamon acts as a built-in air-freshener.  Who knew?
Bagged spices brought along on the trip because who has room in their suitcase to bring all those containers?!

With just a few spices, rice, hamburger, chicken stock (we can't find a beef stock that works for our allergy needs....), frozen pre-cut broccoli, and some cut-up squash, dinner was done.  Here's the other cool thing, I figured out by pure accident due to complete laziness on my part, housekeeping will do the dishes for you - awesome!

One of our several meals prepared "on the go," with just a few simple ingredients and spices.
We managed the hard part - food.  To manage the "just in case" allergy incident response, we carried 3 current epi-pens (and 2 recently expired), and a  stockpile of chewable children's Benadryl.  I boarded the airplane early and wiped down all surfaces with clorox wipes.  JR received a chewable children's Benadryl as we boarded (a little bit of tiredness and an ounce of allergy prevention couldn't hurt when you're 30,000 feet up and nowhere near a medical facility, right?).  We had no allergy incidents, not even a random contact reaction hive for our entire trip.  Hallelujah!

The arsenal of wipes to rid the airplane surfaces and JR's hands of allergens.

Now for the fun and memories part -
  • We toured the bay on a sailboat!
  • Saw the beached seals and got suckered into all kinds of tourist-y trappedness at Pier 39.
  • JR ate french fries at a restaurant - thank you In N Out for cutting real potatoes and frying them strictly in their own frier of cottonseed oil.  JR was giddy with excitement to eat in a restaurant.  Only a food allergy parent would be thrilled that their child's dinner consisted entirely of french fries!
JR and Dad eating french fries from In N Out.  This was HUGE for a little boy that  has no memory of eating restaurant food.
  • Luke  popped his first tooth!
  • Walked along a beachfront marina while JR chased a jack rabbit.
  • Toured the California Academy of Science museum because, yes, we are that geeky of a family.
  • Ate a picnic lunch in Golden Gate Park
Our family at Muir Woods next to a giant coastal redwood
  • Hiked at Muir Woods and spent Sunday morning reveling the greatest natural cathedral known to this world - the ancient coastal redwoods!
  •  Played on the beach at Muir beach.
We did it, and I couldn't be any prouder because now JR has tangible memories of a real family vacation.  I remember thinking at the beginning of our food allergy journey just how overwhelming cooking became.  I/we adapted.  Travel is no different.  It's all about baby steps.  This trip allowed us to step a bit out of our comfort zone.  Perhaps now, we have what it takes to step beyond and go a little further and a little bigger for our next adventure.  My job as Mom is to lift my son up until he can venture out safely on his own.  I just need to make sure I take those necessary steps, too.

Friday, September 7, 2012

Fifty Shades of Egg

At the end of April, I shared Egg-cellent news that JR, my 4 year old son, successfully ate one half of a hard-boiled egg during a food challenge at the allergist's office (see previous post for a detailed description of a food challenge).  As parents, we were beyond thrilled, since it appeared that JR had outgrown his egg allergy!  In a long list of food allergies, egg is one that I will happily check off the list.

However, there was a remote possibility that JR's egg allergy could return with a vengeance following the egg exposure at the food challenge.  Before the egg challenge, JR's last known exposure to egg had been as an ~18 month old, and the reaction had been anaphylactic (for description of anaphylaxis, see the Allergist Mom's post).  Needless to say, nothing strikes fear into a food allergy parent more than anaphylaxis, the most severe, lightning fast (usually), and life-threatening kind of reaction which involves several bodily systems.

Because of this possibility, we were to wait at least a month and follow up with a blood test to look for the specific antibodies to egg in JR's blood that could cause an allergic reaction.  Because it had been so long since JR's last egg exposure, the level of antibodies to egg may have fallen below what the blood test could reliably detect.  This means that the first exposure to egg would not trigger a reaction.  With more time (e.g. weeks), however, JR's immune system may have mounted a "defense" against the egg he just ate. Meaning, antibody production would increase so that the immune system may respond if exposed again (Side note:  normally this is a brilliant process to protect from invading bacteria/viruses/etc that cause illness.  Our immune system learns to fight them off, so we don't fall ill to the same bad "bugs" again).  If the amount of antibody in JR's blood did not change, then we were in the clear, meaning the egg allergy had indeed gone away.  However, if the amount of antibody in JR's blood increased above its last tested value, it could indicate that the allergy had returned.

So, we tested JR, and the answer was not black or white like we had hoped, but rather shades of gray.

So, we've been sitting, waiting, trying to muster the strength to figure this out once and for all.  In the back of my mind, I swing between the worst and best case scenarios.  I remember my sweet, 18 month old, in the midst of hives, throat constriction, vomiting, and sheer terror.  On the other hand, I think of a 4 year old enjoying waffles, french toast, and scrambled eggs.  I hope for the best, but am terrified of the worst.  So we wait...  until finally this past week, we mustered up the courage to try egg.  By the way, we were advised that he will likely be ok, but to watch him closely.  Can you say, "shades of gray?!".  After looking up some of the scientific literature on egg allergy, I completely agree with this rather "gray" assessment.  It just goes to show that we have a long way to go in making allergy testing more certain in diagnosing a true allergy!  I guarantee the doctors advising patients much be just as frustrated as the sufferers! 

JR and I made chocolate cookies, and I threw an egg into the mix.  Just as an extra precaution, I smudged a little cookie dough on JR's face to see if there were any signs of allergy.  Fifteen minutes later, redness and a small hive appeared where the cookie dough had been.  Both JR and I were devastated:  JR because he had to wait for me to whip up another batch of cookies without the egg and me, because it appeared egg may not safe after all.
Redness and small hive where egg-containing
cookie dough was placed ~15 min before photo
This was in no means a controlled, scientific experiment that shows JR will react to egg if eaten, I realize this fact.  There are many possible explanations given the poor "experimental" parameters tested that day (e.g. no experimental control, raw egg instead of cooked egg, etc).  What it does tell me, however, is that blood tests are only prediction tools and not great ones at that.  It is safe to say, we will be talking with our allergist about another food challenge, which is the only way to confirm the allergy one way or the other.... sigh.

Stay tuned for an egg allergy fact sheet and another installment in the "Fifty Shades of Egg" saga.