As promised, an update on our 'at home' Jacob's medical/hospital stuff...sent from Cincinnati Children's hospital. Ever since we have had Jacob, a year now, he has had stomach problems. He eats a pureed/soft diet probably because he was never taught to chew solid foods, but eating seems to hurt him. He complains DAILY, multiple times a day, sometimes surrounding mealtimes, sometimes not, of pain, and has gagging episodes as well. He does not actually throw up, but gags/wretches.
We know he has reflux (because I hear and see it, not because they have done any kind of test to diagnose it) and has been on Prevacid, Prilosec, Zantac, and now is on Nexium. All work (or don't, I should say) about the same. He has been scoped 3 times in the past 6 months. First time, showed H-Pylori, which has been treated and last scope was not present. Also showed some esophagitis...an inflamation in his esophagus...probably from refluxing. Next time, it showed just plain 'gastritis", and some esophagitis, nothing else. They put him on Carafate, which reacts with stomach acid to form a barrier in his stomach and esophagus. He was not getting better, and I would not agree to the "let's just wait a few more months and see" so they decided to do another study, that required placing a probe during another scope. WHen they did that one, they said he has candida esophagitis, and gastroparesis...his stomach does not empty as quickly as it should. They also said he still has gastritis. Again, Carafate, and meds for the candida (yeast), and wait. I have been calling them back to let them know that he is not healing...he STILL complains, cries, refluxes, and wretches, and if they are expecting after 6+ weeks of treatment that he should be showing signs of improvement, he is not!
This lead them to decide to bring him in the hospital to observe for a couple of days and here we are. They are sending in behavioral med people, to watch me feed him, and really think that this is a "behavior"" (because, you know, it is so common for people to reflux, spit up, scream in pain so bad that they bite holes in their arms...all for 'behavior'...attention getting??? I'm paying 100% attention to him!). Today's theory is that his esophagus and stomach is 'overly sensitive" and the behaviorist will help with decreasing the behavior.
I will try to post tonight about how today goes.
Soon
Tonight.
Mary
No comments:
Post a Comment