Last Friday we went in to see Caleigh's GI doctor. He is certain that she has dumping syndrome, but explained it differently than our endocrinologist did. Apparently there are two different types. The one that Caleigh had back in 2009 was plain dumping syndrome. The one that Caleigh has today is called late dumping syndrome, which is also called reactive hypoglycemia sometimes. We still aren't sure why she started dumping. A few thoughts are that she has reached her "critical stage" for feeding rate/volume, there might be a adhesion blockage that backs up during feeds and then releases the food through way to fast, or maybe bacterial overgrowth again.
We finished the visit with the hope that cornstarch will be the saving factor. He also gave us several options that we could try before changing Caleigh's feeding schedule. There are options and we left feeling a little bit better.
We also met with Caleigh's dietician before we left the hospital and she was very happy about her growth, feeds and fluid levels. Everything is perfectly balanced right now.
Over the weekend we continued to keep Caleigh on two heaping tablespoons of cornstarch with each feed until Sunday afternoon. Caleigh's glucose numbers were better sometimes and other times they were back to their erratic ways. By Sunday though, Caleigh woke up with bloody stools. Her intestines are so extremely sensitive that even fancy cornstarch had no place traveling through them.
As soon as we stopped the cornstarch, Caleigh stopped stooling. She didn't go again until this Tuesday morning, 48 hours later.
On Monday, I called our GI and asked that they consult with Endo. This evening our endocrinologist called me and we talked for quite awhile. She really wants Caleigh's sugars between 70-125. When your blood glucose is very low for a long period of time it can cause brain damage; something we obviously don't want. As we discussed options, I quickly googled medications names to let her know if they contained lactose as an inactive ingredient. She seems to be taking Caleigh's allergies and sensitivities more seriously now.
So tonight an order for Acarbose is sitting at our pharmacy waiting to be filled in the morning. This medication slows down the absorption rate, but it is basically a sugar regulating drug for diabetes patients.
We'll try it, keep checking in with blood sugars and see what happens. We have an appointment with Endo early next week.