I've set down a few times to type out my thoughts on the whole dumping syndrome fiasco without much success. So for this post I'm going to try and basically document what is going on.
We went ahead and increased Caleigh's Acarbose dose to the highest it can go. 1.5 pills per feed. This helped the highs she was having immediately following her feed. Sometimes. Her glucose was still dropping to the 40s-50s one hour post feed though. Sometimes.
I say sometimes because at times her glucose would be back to the old highs (200+) and at times it would be back to the old lows (40s-30s). The problem is that nothing was consistent. We've spent the last several weeks living day by day and feed by feed waiting to see how she feels.
Caleigh's stool is fairly consistent. Twice a day in the potty. Once in the morning and then once after naptime. If she skips one of those times then her abdomen becomes hard, big and her button starts leaking like crazy. She feels pretty rotten.
The next "scheduled" stool time comes along and she goes. Her tummy returns to normal and her button stops leaking. The interesting thing is that her twice daily stools fluctuate between nothing but liquid to hard logs.
It's a fine line between constipated and being regular for her.
Our GI suggested trying to do a round of antibiotics for bacterial overgrowth just in case that was causing the dumping syndrome. So tomorrow will be the end of 10 days on Xifaxin. We haven't seen any improvement from it so far.
Endocrinology is pretty much done with their suggestions. They are handing it over to GI as a feeding issue. I'm kinda done with them in general. Because Caleigh isn't coded as diabetic none of her supplies are covered by insurance. They offered up no suggestions or help on the matter.
Their suggestion was to slow down Caleigh's feeds.
So, reluctantly we did.
Caleigh went from 353ml at 195ml an hour three times a day to 266ml at 133ml an hour four times a day. In a single swoop we dashed away at least a solid year's worth of progress. Gone.
Caleigh didn't want a night feed. She hasn't slept with a tube attached to her g-button in probably six months or more. She kept telling me "no." It was a difficult transition.
So far the slowed down rate has helped the highs dramatically. That's good news. The lows on the other hand are still happening, but not with every feed.
I'm awaiting an appointment with our GI to discuss more options. My gut says there is a narrowing somewhere in her intestines causing the dumping and the sensitive constipation issue. With Caleigh's latest growth spurt her intestines may have been affected in some way. Scar tissue doesn't grow, but I hope I'm wrong.
I have to keep telling myself that this isn't that bad. It could always be worse especially with short gut. A short nighttime feed isn't the end of the world for our family. At least at this point I'm over my disappointment regarding the feeding goal. On to bigger and better things like getting our girl to feel better.