After playing a bit of phone tag, I finally got the results to Nolan's Upper GI Barium study. As expected, his anatomy is entirely normal. Since barium studies are not intended to diagnose or evaluate reflux (scintiscans and pH probes are far better, and only a pH probe can diagnose the severity of an acid reflux disorder), we didn't expect to see any reflux on the X-rays. Nolan's first upper GI barium study was entirely normal, but they did manage to catch a reflux event during the most recent test.
After talking to the nurse practitioner with our ENT clinic, I found that they do Upper GI studies routinely prior to fundoplications. The pediatric surgeon needs to verify normal anatomy (or abnormal anatomy) prior to embarking upon the procedure. In addition, certain conditions (like hiatal hernias) are repaired via a fundoplication.
If (and that is a big IF) we decided to proceed with a fundoplication, the first studies are completed: we won't have to go through all these tests once we visit the pediatric surgeon (if we didn't do them now, we would have to visit the surgeon, then do the tests, and then return to the surgeon again).
In the meantime, Nolan is coughing and gagging a lot - his blasted reflux seems to get consistently worse rather than better. We can hear his stridor increasing, and he complains about getting "throw-up" in his mouth. Reflux can flair up randomly, so I'm hopeful that this recent flair will dissipate soon. Ugh.
3 comments:
did you say something once about checking into gastric emptying for Nolan? Any results on that yet? There are meds that can help speed things along so they don't sit in his stomach as long - less there means less to push back up? Keeping fingers crossed for all of you!
We haven't done motility studies yet. He did have a gastric emptying scan when he was failure-to-thrive at the age of 18 months and that came back with 27% emptying after 1 hour (borderline/mild gastroparesis according to our ENT, full-out gastroparesis according to other docs). I want to get a second opinion from the geneticist at Cleveland Clinic before we even think about proceeding with a fundo. And if we do visit the surgeon, we are going to insist on motility studies as part of the pre-op.
Reflux is such a strange thing. X goes off his reflux medication, the one that makes things less acidic and therefore less painful, every time he gets sick, which was often this winter. At one point, he'd been off of it for five weeks with no side effects. He simply had no reflux during that time, even though he was eating and drinking his normal diet for the most part. Now that he's back on it, he's been having some reflux again. Not a causation, just a very strange correlation.
He used to be on another drug that increased the speed at which his stomach empty its contents, not that he had slow motility, but just to be cautious. He's been off of that drug for a long time now and we don't see any difference.
X's reflux comes and goes. It seems totally random, unpredictable and uncontrollable, like so many other things we deal with!!!
Post a Comment