We are doing creon again and will for awhile now. GI said a lot of her Mito kids use it and it helps stools and they're pretty sure Ty has Mito so they want him on it. And then they're having him take flagyl for a week every month for the next 6 months cuz he has bacterial overgrowth in his small intestine. So we added 2 more meds to our list, oh joy! We are going to try weaning him off thickened fluids and see what happens and they want a repeat swallow study to see what his dysphagia is doing. Every time we try weaning his thickened fluids he gets really bad respiratory infections with croup. So they're hoping that trying to wean during the summer (which we tried doing in the summer before) will help since he's less likely to catch a cold. We'll see. Then they want just an initial feeding evaluation done. They don't want to start feeding therapy, just get an evaluation done. Then follow up in 2 months, we'll see if we last 2 months, lol!
on Jun. 29, 2012 at 8:26 PM