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.

Update: Nutritionist & Next Steps

We had a great visit with CHOP Nutrition this week.  Nutrition visits are always great - I often feel like our Nutritionist is the only at CHOP who actually listens to us, so those visits usually consist of my brain dumping all of my problems on Mimi while Aidan screams his heart out, because he hates that place.

As usual, I digress.

This week's visit was actually really great.  Last month, we all agreed to increase his feeds and see if that made him put on any weight.  This week, we found out that he gained almost an entire pound!  This is huge news!  He's up to 25lb 5oz (4.3%) and 33 1/4" tall (1.4%).  So he's still not huge - but he's growing.  We'll take it!

Mimi also worked her magic to get CHOP homecare to start delivering our formula - which NO ONE has done for us over the past two months that we've been asking for it.  So I'm pretty sure she's basically a magician.

Next steps:

Go see GI to discuss their thoughts on next steps.  When do we scope again?  Do we keep the lemonade even though he requires daily Miralax in order to be able to drink it?

Go see the new Allergist to discuss what might be a safe food to trial. This one scares the daylights out of me, and I have no idea what we're going to try. 

In prep for seeing the new allergist, I got all of Aidan's allergy records from both allergists we've seen (Allergy & Asthma and CHOP's EE Clinic).  Nothing special in the A&A file - they diagnosed him with soy enterocolitis when he was about 8 months old, and told us to reintroduce apples and bananas.  All of their skin testing was negative.  When he was 15m old, we did environmental testing, and he tested positive to grass, trees, weeds, and dust mites.  He'd also recently recovered from RSV, and had uncontrolled asthma symptoms.  He was started on daily pulmicort and zyrtec.

The CHOP file was a little more interesting.  He was there at 12m.  He was diagnosed at that time with IgE allergies to soy, peanut, and peas.  They also noted that he could potentially have FPIES (specifically in reference to milk and rice.  I don't know why those were singled out.)  This is interesting, since no one had ever uttered the word "FPIES" to us.  And I guess it doesn't really matter since he doesn't eat anything - so we don't have to worry about an FPIES reaction.  But it might have been nice to know we should be looking out for them?  Anyway, at 19m he was Patch Tested, and positive to eggs, milk, wheat, corn, barley, potato, beef, green beans, and peaches.  He was "equivocal" to rice, apples, and oats - however he has failed rice and apples based on symptoms in the past.  Chicken, pork, and turkey were negative.  Carrots were considered negative although I clearly saw a hive, so we agreed to disagree on that one.  They recommended starting food trials.  And that was our last visit.

So long story short, I have no idea what we'll trial but it's probably a good idea to get the ball rolling with this new allergist.

It feels good to have a plan.  Or a plan to make a plan.  Or at least someone who listens and cares about my kid.

Light the Night

I'm really excited to say that Aidan and I will be walking with dozens of others from my company in the Leukemia & Lymphoma Society's Light the Night walk this year.  We are walking in honor of my coworker's son, Matt, who was diagnosed last year with Acute Myeloid Leukemia.  Matt has spent too many months in CHOP receiving four rounds of intense inpatient Chemotherapy, all leading up to a stem cell transplant this March.  He's an amazing kid with an amazing family around him, and we're proud to walk with him :)

Our goal is to raise $100 for the Leukemia & Lymphoma Society.  Please consider donating - every dollar really does help a patient live a better, longer life.