Saturday, March 10, 2012

Story of a Food Trial

What's a food trial?  How does it work?  Who decides what he gets to have?

Ah, food trials.  We've attempted to trial a few things now, and it hasn't worked out yet.  So I can only tell you about food trials right up to the point where we fail them.  I hear tales of success - and I look forward to our first Pass.

So, what's a food trial?  It's more or less what it sounds like, trying out a food to see if it works out.  In our case, Aidan had been without food for nearly four months before his first trial.  It was the first non-formula, non-medicine substance he'd eaten in a long, long time.  We were **so** excited for him!

How does it work?  Again, I can only speak to how it works for us - but Aidan's doctors recommend introducing one new food at a time, feeding it every day for about three months, and having a scope & biopsy at the end to check for internal reactions.  If at any point we notice signs of a reaction, we get in touch with the doctors immediately and decide what to do.

Who gets to choose?  For us, it was a combination of what we wanted and what he needed.  A Nutritionist at CHOP helps us make decisions like this.  We chose rice because it's versatile, quick and easy to make, and he know he likes it.

 I like it!

So how did it go!?!

Well, to make a long story short, the trial failed.

To make a short story long again, we introduced rice in the form of puffed rice cereal on a Wednesday.  At first, he stared at it, totally confused.  It took a good solid half hour before I could coax him into putting a puff in his mouth.  Once he did, he was so excited.  He gobbled them up and begged for more.  I was excited for him - it seemed to be going well.


His teachers were excited for him, and since we hadn't gotten any bad reports, we assumed it was going well.  I rarely see Aidan in the evenings because of my work schedule - so I didn't really notice anything was wrong.

On Saturday, 4 days into the trial, I took Aidan play at Gymboree.  He was a beast.  He screamed.  He cried.  He grunted.  He arched.  He refused to stand or walk, preferring to drag his belly on the floor.  He had horrific diarrhea and his ever-present eczema patches got redder and scalier.  This wasn't looking good.  I explained it all away as only a mother can...  Teething?

Sunday found us shopping with Megan.  More screaming.  More grunting.  I think I recall Megan shouting over his death-squeal that this reminded her of pre-diagnosis Aidan.  I think my response was "Nah, c'mon, let's go buy more rice!" (And we did.  Aren't I the optimist?)

Monday found me facing facts on the phone with Aidan's doctor.  It was considered a fail.  We were miserable, he was miserable, and the rice had to go.  It was actually pretty sad, especially for him, because he truly enjoys eating and has no ability to connect the eating and the pain yet.

In the following weeks, we tried and failed with Chocolate Neocate, Vanilla Neocate, Vanilla Elecare, Tropical Neocate, Neocate Nutra "pudding", and E028 Splash.  Those were some tough, tough weeks.  We're in no rush to try any of it again anytime soon.

So what if my cheeks are scaly??  I've got pudding!
It takes at least a few weeks to clear Aidan's body of an offending food.  The behavior goes back to normal first, then his GI system, and finally his skin.  Those little red cheeks are always a telltale sign that he's eaten something he shouldn't have...

These cheeks, mommy?

Yes, son, those cheeks.

And these???
Those too.

I am hopeful that our next trial is a success, but I'm confident that no matter what the outcome, every step we take is a step closer to knowing how to help him.

1 comment:

  1. I just stumbled on your blog searching 'failed food trials' on google. My 8 yr old has EoE and is also trialing at the moment. He has 2 safe foods, rice and bananas but has failed all others trials thus far. Your fails of Neocate and Elecaare are familiar to us as well. Cam is allergic to corn and is very sensitive to artificial sweeteners. He has a G tube and we use Elecare Jr Unflavored...Here is our story: