Gastrointestinal Pain (chronic)
My son has esophagitis, gastritis, and poor motility of bowels. He no longer eats his soft diet because it causes so much pain that he becomes self-injurious. He had little improvement with a Nissen Fundoplication and G-tube. As he has gotten older, the GI problems have become more severe.
Does he still have esophagitis? Without more data the only suggestion I have is to put a pH probe in his stomach (beside the G-tube) and run it for 24 hours on his Prevacid. We have had a number of people with CdLS with remarkably poor acid control on what should be a correct dose of Prevacid. If the pH is low, I would give more frequent or larger doses of Prevacid until the pH showed he is neutral most of the time.
CP/ TK 7-13-10
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