All Quiet on the Asher Front?

I think we finally have some good news.

I'm going to start at the beginning here because the last three weeks have been 100% Asher health focused and I can't remember what I've said or talked about up until now.  On May 31st we saw our speech therapist at the feeding disorder clinic.  At this meeting, she said that she had talked to a few physicians in various departments, all of whom agreed that the way I had described Asher's poop was not normal for a child his age.  Her recommendation was that he see a pediatric GI specialist because his poop, in addition to his very restricted diet (per the feeding disorder team), made it likely that he had a malabsorption issue and could be nutritionally deficient in any number of areas.  At this meeting I said again, I'm also worried about his appetite and that he isn't gaining more weight, and was told, again, like I've been told since March, that I shouldn't worry about that.

When I called the GI number that the speech therapist gave me, it went straight to a voicemail message informing the caller that all of the GI providers had left the state and there were no longer pediatric GI specialists at the (only) Children's Hospital in New Mexico.  So I immediately called the U of M and made an appointment there.  At this time, the appointment was going to be about two months in the future, and being concerned about his nutritional status up until then, a CBC and CMP were ordered here so that we could take a look at how Asher was doing now.

On June 3rd I received a call from the nurse.  A handful of values had come back slightly abnormal, but one of his metabolic enzymes had come back at 3,000 when it should have been between 100 and 300.   Our pediatrician told us that he has never seen levels this high in all of his years working with kids and had no idea what could cause it.  He wanted to retest in a week (hoping it would be back to normal).  I did a really good job not googling what that could mean for the duration of our time at Allie and Caleb's wedding.  But when I got home I let my guard down.  Dear Google, while you are so wonderful for so many things, you absolutely suck for people waiting to get test results back.  The causes of an ALP that high in kids (if other liver enzymes were normal) would either be bone or intestine based.  Either way, not good news.  ALP is sign of things breaking down in the body, so a level that high could mean a big problem.  Or it could simply be a syndrome where the lab is elevated for no apparent reason and comes back down on its own.  But here's the thing, sitting in Minnesota, all I could think about was the fact that my child had not been well since November and now this lab came back off the charts.  If he had been perfectly healthy for his whole life up until that point, I probably wouldn't have sweated it too much.  But he hadn't.  And I knew deep down in my mom gut that something with his weight wasn't right.  So I worried.  Thing number two.  If we had a pediatrician who could confidently tell me "This is what this means" or "This is the next step" or "You don't need to worry about this" -- then I would listen and feel better.  But we don't.  We have a pediatrician (who believe it or not folks is the best pediatrician available) who says, "I ordered this lab, but I don't know how to interpret the results, so those numbers are meaningless to me," and "This is the worst I've ever seen, but I don't know what it means".  To his credit, he is the first to say "If this is something we need specialist input because it is beyond my scope" -- but that doesn't help a worried mom and dad in the meantime.  And beyond that, the onus of responsibility then falls on us.  Not just to advocate for our son, but to coordinate his care, track down the specialists who can interpret the test results, get second, third, and fourth opinions, and make medical decisions for Asher that we are not qualified to make, and quite frankly shouldn't have to.  But that's how it is.

 When we got back to New Mexico, we had the lab (and additional liver tests) done and it came back at 1,800.  Lower, but still far too high.  Our pediatrician was encouraged that it went down, but when we met with him in person it was very clear that he was uncomfortable with how high it still was.  This same week we went in to see the GI nurse practitioner covering the GI clinic who mistakenly told us Asher had dropped to the 25th percentile in weight.   Although the dietician we saw later that day corrected that figure to the 50th percentile, he had still dropped from the 75th and for the first time, people looked at his weight over time, not just a stupid growth curve at that one point in time, and it finally dawned on everyone, "Oh shit, this kid hasn't gained weight since January".  So now we had two big issues: 1) why hasn't Asher gained weight (and is falling off the growth curve) and 2) what the heck does this lab mean?  We didn't know if they were related or separate.  Our pediatrician asked to do the lab one more time.  We got the results on Wednesday and his ALP is now down to 800.  Everyone seems comfortable with this and we are going to go with a 'wait and see' approach, retesting in 2-4 weeks to confirm it has dropped back down in the normal range.  The leading theory at this point is that he had the elevated-for-no-good-reason syndrome and that it is unrelated to his inability to gain weight.  Meanwhile, the GI NP called me yesterday to talk about his weight.  After reviewing the lab report from his esophogeal biopsy at pediatric rounds, the group of physicians there were puzzled by the presence of lymphocytes in his esophagus, because apparently, those shouldn't be there.  The three reasons (as explained by the GI NP) that you would find lymphocytes in the esophagus are: 1) reflux, 2) food allergy, 3) celiac disease.  All of these things have merit in Asher's situation.  We know he had/has reflux confirmed by an upper GI study, and although the ENT at the U of M had said there were no signs of inflammation during his surgery, the presence of lymphocytes could indicate irritation from reflux.  We've started him on a short trial of Prevacid to see if his appetite improves (by the by, a month long trial of Prevacid will cost you/your insurance $392.95...wowsers).  A food allergy is also a possibility as Asher projectile vomits when he drinks milk.  We still give him cheese and yogurt because he seems to tolerate that fine, but if the dairy he eats on a daily basis is upsetting his stomach, that could also explain his lack of appetite.  We will bring him in for some allergy testing to rule this out.  And finally, gluten, you bit*$.  My mom and I both have pretty intense gluten sensitivities, so this is certainly in the realm of possibility for Ash.  Celiacs would explain why he hasn't gained weight, even though at times his appetite has been good and his intake has been up.  All of these GI things we will start following up on in the next couple of weeks, culminating with a second opinion at the U of M in July.  The hope (fingers crossed) is that by August we are done with doctors, done with tests, done with worrying about Asher's health.  It will have been 10 months of pretty much non-stop action by then, and we are definitely ready for a break.

But for now, we are in a good place.  All of the GI stuff is manageable as long as Asher starts to gain weight.  We will get his weight checked in a week or two to see how he's doing with his new 'all fat all the time' diet.  Fingers crossed that for the first time in nearly 7 months the kid gains some poundage!