GI Specialist Appointment

We met this morning with a GI Specialist at Children's Hospital named Dr. Barth. We really liked him because he seems like a problem-solving kind of guy and definitely asked some new questions and posed some new ideas we hadn't heard talked about before. He was of the opinion that even if being a preemie is the cause of Truman's eating problems, that doesn't mean we can't find a better solution than where we are now. He made some suggestions we like and some we don't.

First, Dr. Barth wanted to rule out lots of possible causes for Truman's troubles. His plan is for testing for celiac disease (we did the blood draw today at Children's--it was awful because it took more than one try) and a sweat test for cystic fibrosis (the genetic test was done in NICU because they suspected it then, but it came back negative). He also brought in a nutritionist who talked to us about some alternatives for adding calories, so we are going to try Benecalorie in addition / in place of Duocal and add it to everything. We are going to formally monitor calorie intake for a few days to make sure Truman is getting enough calories. We've done it informally before and think he's getting about 1000 calories because of all the fat-loading we do. You would think he would be huge from that.

Dr. Barth prescribed erythromycin in low dosage because one of the side effects is faster stomach emptying. The idea is to make Truman's stomach empty faster so that he will feel hungry sooner. Apparently, it also helps move food through faster so that there is less opportunity for it to come back up.

If the erythromycin doesn't help things, calorie intake is at least 840 a day, and the tests come back negative, Dr. Barth wants to do an endoscopy to look for inflammation, test for GI allergies, and basically check things out. If a "cause" or solution isn't found with those tests, Dr. Barth said a feeding tube may become necessary to get Truman to consume more calories with overnight feeds. We really don't want that to happen because it's another surgery and once you go down that path, it's very hard to wean off of it.

Dr. Barth was concerned that Truman has never had a growth spike and discussed what I have thought about so many times and that's the fact that if Truman doesn't start gaining faster than his peers, he will not catch up. As it is, Truman just falls farther and farther behind. He's yet to experience the "catch up" growth that most preemies do.

So, we feel glad that we've got an "expert" on the case now and that he's trying to solve the Truman eating puzzle. We go back on October 29.