Thursday, September 5, 2013

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.

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