Out of Control

I like my life to be predictable.  I’m a stay at home mom.  I have two kids and a sweet husband.  I live in the ‘burbs.  Most of the time, I feel like I have life under control.  But this OIT thing, well, it’s OUT of my control.  Will Brendan be well enough to start OIT?  Will he have reactions to his doses?  Will he develop the dreaded Eosinophilic Esophagitis that pretty much shuts out all hope of OIT working?  Will I be able to sustain weekly drives to Dallas?  Will his school work suffer from all the missed school days?

3 a.m.  That’s when the questions begin to swirl, and I realize that I am helplessly out of control of this life.  Luckily, the ONE who IS in control brings me back.

“For I know the plans I have for you,” He says, “Plans to give you a hope and a future.” 

“Cast all your cares on Me,” He whispers, “I care for you.”

“Don’t be anxious,” He calms me, “Let My peace guard your heart.”

“Take My yoke,” I feel His presence rush over me, “for My yoke is easy and My burden is light.”

And then it hits me.  A wave of peace.  The knowledge that I am NOT in control of ANY of it.  I never have been.  But He is.  And He knows my name and the number of hairs on my head.  He knows the number of hairs on my sweet boy’s head, too, and He cares for him even more than I do.

And I have HOPE.  I cling lightly to the hope that Brendan will be successful with OIT, but I hold on tight to a deeper hope.  The hope that He knows what is good for Brendan, and that He will make that good happen.  OIT, or no OIT.  Tolerance, or continued allergic response.  God’s got this.  He’s weaving this experience into Brendan’s story, and it will all work together for his good.

Out of control?  I sure am.  But I KNOW the ONE who IS in control, and there’s no one else I’d rather have guiding my life.

The Nitty-Gritty

I was on the phone the other day with my best friend in the whole wide world.  Obviously, she’s aware of our Oral Immunotherapy journey, but when we started talking it became clear that she didn’t have a clue about the exact details of the therapy.  I had told her WHAT we’d be doing, but I hadn’t explained HOW we’d be doing it.  If my best friend didn’t completely understand, I’m going to go out on a limb, and guess that you’re probably also wondering how this whole OIT thing works.  

So, here’s the nitty-gritty:

Oral Immunotherapy involves feeding a child tiny amounts of a food that he’s allergic to and then slowly increasing the dose until the child can tolerate the food.  There are several different protocols out there, so although the idea is the same, it can look a little different in each doctor’s practice. (**NOTE for any crazies reading this:  Please don’t try this at home.  That’s a good way to put your kid into the hospital—or worse.**)

We’ll be starting with eggs.  We chose egg for a couple of reasons: 1) Getting eggs into Brendan’s diet will open up a ton of new foods, especially since he can’t even tolerate egg in baked goods right now.  2) Nuts are scary.  We’re gonna do scary last.

On our first day, they will start with micrograms of egg, and feed him increasing amounts every 15 minutes.  We’ll be at the doctor’s office ALL DAY.  That oughta be fun.  Thank God for iPads.

That first day, they will keep increasing his dose until he starts to show early signs of an allergic reaction, or until they get to their day one maximum (I’m not even sure how much that is!), whichever comes first.  He’ll then be sent home with the last dose that he tolerated without a reaction.

Over the next six months, Brendan will move from eating micrograms of egg
to eating a tablespoon of egg white powder (15 grams).

He’ll have to take the dose twice a day, as close to 12 hours apart as he can (we can go as little as 9 and as much as 15 hours between doses).  After each dose, he’ll have a 2 hour rest period, where he can’t do any aerobic activity.  They’ve found that exercising right after a dose can bring on a reaction.  I’ve already thanked God for iPads in this post, right?!

Once a week, if all goes well and he tolerates the dose, we’ll head back up to Dallas to “updose.”  They’ll increase his dose and watch him for an hour.  Then, we’ll drive back home that same day.  iPad = gift from God (are you seeing a theme here?).

He’ll take the dose twice a day for another week, and then we’ll rinse and repeat.  If he tolerates all the doses well, it should take him about 6 months to be eating the max dose of egg, which is a tablespoon of egg white powder.  At that point, he’ll go on “maintenance” where he’ll dose once a day, possibly for the rest of his life.  That last part is the realm of the unknown.  No one has done this long enough to know if eventually he’ll be able to stop taking his maintenance dose and still be able to eat egg. 

At any rate, once he’s on maintenance, he should be able to eat as much egg as he wants to.  Cookies.  Cakes. French toast.  Boiled Eggs. Scrambled Eggs. Omelets.  At the risk of sounding like Forrest Gump, I’ll stop there, but you get the idea J.

So, that’s the Nitty Gritty.  We’re set to start in two days.  We've got the iPad charged and ready.  Bring on the egg!

A Bump in the Road

A Bump in the Road

(before we've even left the driveway)

“But you haven’t even STARTED Oral Immunotherapy yet,” you say.  “How could you POSSIBLY ALREADY have a bump in the road?”

Well, we're just special like that, I guess!  Brendan has asthma.  It is usually no big thing around here.  He has flare ups maybe twice a year—once in the fall during weed pollen season and once in the spring during tree pollen season.  His asthma was so well controlled that last summer, his allergist suggested that we remove his daily inhaled steroid completely and see how he does with NO asthma meds.  The answer?  Fine.  Until four days before we are scheduled to see Dr. Silvers about starting oral immunotherapy.  Yep.  He has timing.

So this happened-- just a few days before our first visit with Dr. Silvers.
Coincidence?!  I think not.  Sometimes I has the dumb :(. 

There are only two reasons someone can’t start OIT: a condition called eosinophilic esophagitis and uncontrolled asthma.  So, on April 8, my wheezy, coughing child traveled to Dallas hoping to pass a pulmonary function test that afternoon and begin OIT the VERY NEXT DAY.  Instead of ending our April 8 visit with a pulmonary function test, we finished with a nebulizer treatment and were sent home on a slew of asthma meds to control the flare.  A new date was set to begin OIT: April 30.

We decided to try a pulmonary function test here in Houston first before we traveled all the way to Dallas again.   We gave the asthma meds religiously.  We ordered a peak flow meter and practiced breathing into it.  We weaned off the rescue inhaler and oral steroids as he improved.  On April 23, Brendan took a Pulmonary Function Test at a local pulmonologist’s office, and the results came back NORMAL!  

Our bump in the road is beginning to smooth out.  T-4 days before we begin OIT.  Should I keep Brendan in a bubble until then?  I've thought about it.

Fed Up

One small piece of penne pasta.  That’s how our food allergy journey started.  Yes, I remember the SHAPE of the pasta.  You don’t forget many details of your child’s first allergic reaction.  And so it began:  Allergic to wheat, then eggs, then peanuts and tree nuts. Reading labels.  Learning how to cook without the staples of flour and eggs.   Two hour trips to the grocery store, just to discover exactly what my kid COULD eat.  Benadryl.  Epipens.  The search for an understanding preschool and a safe restaurant.  Hives.  Vomiting.  An ER visit thrown in for good measure.

Brendan on his first birthday in 2005.
His first birthday cake was free of wheat, barley, rye, eggs, peanuts, and tree nuts.

There have been victories along the route of our journey, too.  The first successful birthday cake.  Outgrowing our wheat allergy.  Sweet friends who refuse to bring peanut butter in their lunches so that they can sit next to my boy.  Sweet families who make their child’s birthday cake safe for my kiddo, too.

And so here we are, ten years after that fateful piece of pasta.  We've settled into a routine:  Always bring your lunch to school.  Read every label, every time you are in the grocery store.  Read it again before you make dinner, just to be safe.  Eat at the same handful of restaurants.  Remember that the chicken nuggets are safe at McDonald’s but only the chicken STRIPS are safe at Whataburger.  Bring your own cupcake to birthday parties.  Sit at the end of the table at lunch.

Brendan this March at Disney World, showing off safe cupcakes.

But we weren’t supposed to still be in this routine.  There was supposed to be a FIX by now.  Since he was a baby, they’d been telling me, “There will be a FIX in the next few years.  Not a cure, but a FIX.  Some way to make his life easier.”  You see, clinical trials of Oral Immunotherapy, where they feed allergic children small, increasing amounts of their allergens, had just begun when Brendan was diagnosed.  Ten years later, with an 85% success rate, OIT is still in clinical trials, and we are still reading labels and avoiding allergens.  

And so, I am FED UP.  Fed up with food allergies.  Fed up with waiting for clinical trials to become common practice.  Fed up with the mantra of complete avoidance.  Luckily for me, a handful of allergists are FED UP, too, and they've begun offering OIT in their private practices, despite warnings from the American Academy of Asthma, Allergy, and Immunology.

And so, on April 8, we journeyed to Dallas and met Dr. Silvers for the first time.  If all goes well, April 30 will be DAY ONE for us.  Day ONE of OIT.  Day ONE of our journey to freedom from food allergies.  So sit back, grab some safe popcorn, and read along as we journey through Oral Immunotherapy.