Sunday, September 8, 2013

Update: GI & Next(er) Steps

After our visit with Mimi, we were really on a roll, and got in to see GI right away. 

I wonder if it would be rude to actually bring a stopwatch and time our visits with Dr. Liacouras.  I've never seen a doctor enter or exit a room so quickly.  The thing is though, I can't complain.  The man knows what he's doing, he's got a plan (of some sort) in mind, he just doesn't really have the time to pat you on the back and reassure you that you really have done everything that a good mother should do. 

I didn't bring a stopwatch this time, but my very scientific estimate is that we saw him for roughly seven minutes.  Two of those minutes were spent with him actually making physical contact with my child, which is always a huge win.

He thinks we should probably discontinue the lemonade, but he understands what a blow that would be to Quality of Life.  He is okay with keeping it, but points out that it's likely the cause of Aidan's current requirement for daily miralax.  Not because of an allergy or an EGE reaction - probably something more like exacerbation of IBS.  Sorry, kid.  Only, not that sorry, because he's not the one changing and washing the diapers.  Sorry, me.

Anyway, we're all agreeing to disagree about the lemonade, or something like that.  Agreeing that we probably should take it away and that we probably won't do that.  Because hey, I'm realistic.  If I take it away, my baby will hate me, and also he'll never drink again, and his urologist will hunt me down and murder me.  Is it really worth it?  (Note: Maybe I'm exaggerating a teeny tiny bit.)

He's supportive of our move to see a new non-CHOP (ex-CHOP) allergist this week, and supportive of our decision to at least try to find a food to trial.  Plan is to find a food, try a trial, and if all goes well, scope in 3-4 months.  My hopes aren't all that high - we've never made it that far in a trial - but still.  Trying is evidently the thing you're supposed to do.

That's probably another post for another time - Everyone else I talk to is crazy-over-the-moon for food trials.  Let's get this kid eating as fast as we can and ditch this tube!  But I don't feel that.  Not even an ounce of it.  Food trials are "tear you from a dead sleep in a cold sweat" scary for me.  Will tomorrow be the day he anaphylaxes?  Does he really have FPIES?  Will a few more bites ultimately send him into shock?  I recognize that these aren't normal thoughts - but I still have them.  I'm hoping next week's visit with Allergy at least helps quiet some fears.  I hope we can find something safe.  I hope.

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