Monday, March 5, 2012

A Visit to CHOP - GI

Having a sick child is like finding yourself suddenly swimming alone in the middle of the ocean.  You're not sure how you got here, you have no idea which way is "out", and you have a vague sense that this wasn't what you meant to sign up for when buying that bikini last Spring.  From time to time, you come to a buoy, and you cling desperately to it, because it's what's keeping you from totally slipping underwater.  You can't ever stay at the buoy - you have to keep swimming - but the last buoy you saw and the next one you hope to see are always at the forefront of your mind.

Today, we reached one of our occasional buoys.  A follow up appointment.  Our buoys tend to be about a month apart, and they rotate between GI, Allergy, and Nutrition.  Today, it was GI.

Knowing it would take a while (doesn't it always), I took a vacation day from work.  Aidan woke up early and played happily while I packed and repacked bags (Do I think we'll be held hostage at CHOP?  I don't know.  I just know I can't be seen there without at least five bottles, a blankie, and as many toys as I can stuff in my bag.)

We arrived, as usual, nearly an hour early.  Better early than late, right?  It gives Aidan a chance to own that place.  He especially likes the activity bus.  When we arrive, Aidan wants no part of me.  He's way too old to cry in the waiting room or cling to mama. 

This child requires no comforting.

We meet lots of other kids in the waiting room, including a little girl seeing Dr. Liacouras for the first time.  That was us, not so long ago, and I have words of wisdom for this situation.  He's rude.  He's dismissive.  Be pushy.

Suddenly, it's our turn.  Aidan hears his name now, and responds by walking quickly back to the activity bus for one more spin of the wheel.  I love watching his personality sneak out like this.  He'll come when you call him... right after a little mini-act of defiance.


The visit didn't start off too promising. 

Aidan weighed in at 18lb 5oz (a full 3oz heavier than Friday, which is unsurprising since he eats twice as much for us on weekends as he does for his teachers all week long.) and is nearly 28" tall.  Less than 1st Percentile for weight, less than 1st Percentile for height.

The doctor didn't remember us, nor did he attempt to pretend to.  He again told us that Aidan probably has some severe allergies and that we should try an elemental diet.  I tersely reminded him that we're on month six of foodless fun.  Then he said we should wait a couple of months to scope fully elemental.  Wrong again, L.  We did that almost 3 months ago.  So this brought us to Oh, well I'm glad you reminded me.  I believe Aidan has something called Eosinophilic Gastroenteritis.  If it were just his esophagus, we'd call it Eosinophilic Esophagitis.  If it were just his colon, we'd call it Eosinophilic Colitis.  But it's both.  Hence, Eosinophilic Gastroenteritis.  Bingo.  Back to where we were at our last visit.  At this point, my heart kind of sank.  We're not making any progress, are we?

But I'm staying positive today.  And things did pick up from there.  We left with a pretty solid plan.

What we know: Aidan is not eating enough to gain weight.
Possible Reasons: 1) His tummy hurts too much.    2) He doesn't feel like it.
What do we do? We act as though it's #1 until we can prove that it's not.  

- Today, we begin oral steroids.  Since Aidan had high numbers of eosinophils even when he was 100% elemental for 3+ months prior to his scope, we are fairly positive this is not just a food problem.  An oral steroid may calm his esophagus and colon further, which would make him comfortable enough to eat.
- We will try these steroids, with weekly checkpoints with the CHOP staff, until the time of his next scope.
- The next scope will take place in the next 3-4 weeks.
- We will know around the time of the scope whether or not the steroids are helping - if they are, we will have a happy, growing eater on our hands.  If not, we expect no changes (other than some 'roid rage!).

If the steroids don't work, we will schedule Aidan to have a feeding tube placed.  First, an NG tube.  Assuming it's well tolerated, about 4 weeks later we will place a G tube.  More on that later.

If the steroids DO work, things get a little trickier.  We can't just leave him on steroids forever.  We will be weaning him down from them and switching him over to immunosuppressant drugs.  In theory, that will calm the reaction in his gut and let him grow and gain some weight.  This scares me - how do I send an immunosuppressed 1 year old to daycare?  But that's a worry for later.

For now - we try what we have and hope he doesn't morph into The Hulk.


  1. I love the swimming metaphor. You must really love swimming in the ocean!