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Danny went in to see the GI this morning for a followup from trialing off the enzymes. It didn't go well. He has been on antibiotics for the last 2 weeks and has another round that isn't going to be done for another 8 days so he has had diarrhea all this time and we don't know if it is from the lack of enzymes or from the antibiotics. He also lost 1/2 pound. She wants to start him on probiotics and if his diarrhea isn't gone within a few days of finishing the antibiotics we have to start enzymes back. Regardless of how he does if he loses weight he will have to start them back at his next appointment in a month.
Poor little guy. I hope it resolves itself soon. Antibiotics are hard on Carrie too, can you ask for a tier 2 antibiotic? (Carrie gets sick from tier 1 antibiotics, but tier 2 are much nicer on her belly)
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
He was on Ultrase then Zenpep when Ultrase was discontinued... He had pancreatic function tests done and the first one showed that he didn't make chymotrypsin. The second one showed that he more or less made no enzymes so he has to take capsules of those enzymes when he eats. However, the GI is thinking that due to a few test results we have gotten that he does make at least some of those enzymes and the second test that we had done was just a bad test. She said it is a VERY difficult test to do and sometimes it just doesn't work well. His fat soluble vitamin levels (A,D,E, and K) were normal. Even after enzyme replacement children that don't make them naturally can't absorb these vitamins well enough to be in the "normal range." He has also had the fecal fat and elastase tests done a few times and they have all been normal. With enzymes, without enzymes...all normal. It just doesn't make sense...and yet he still isn't growing... :/
The first antibiotic was Augmentin...that one gave him diarrhea pretty badly. They then put him on Omnicef because he still had the sinus infection. That one has been better. He finished the Augmentin on Sunday, started the Omnicef on Monday and diarrhea was gone by Wednesday. I don't think it was the probiotics that helped though. We are still giving them to him but they didn't help before so I don't think they will help now...