Back in May of 2009 Caleigh started to have dumping syndrome. I went back and read my blog posts around that time, and there are several that led to a hospital stay due to the dumping that she was doing. Back then Caleigh had a lot going on. She had bacterial overgrowth, getting numerous feeds throughout the day, ear infection, and a yeast infection too. I remember the days of so much going on at once and it being difficult to pin point exactly what was going on. We would spend days of going back and forth on the phone and going to appointments between specialist only to end up in the hospital for well rounded care.
Caleigh's urine did not have sugar in it on Monday. The urine that was tested on Monday was from three hours post feed. The urine taken the previous week was during a feed. She's still spilling sugar during her feeds. With the blood glucose readings that I recorded we were referred to continue with our endocrinologist. Our pediatrician had done all that she could do at that point. So I started calling Endo and GI. Our Endo Dr. is convinced that Caleigh is having classic dumping syndrome.
I believe her....somewhat.
Dumping Syndrome is described as having abdominal cramps, nausea and diarrhea. The first two symptoms could be happening, but Caleigh has been regular with her stool for as long as I can remember with the exception of getting constipated after Botox. When she was dumping back in 2009, 15 minutes into a feed and she would start stooling, and not quit until the feed stopped. Now days, Caleigh is regular. Once in the morning on the potty, once in the afternoon in the potty and occasionally again before bedtime. 1-3 times a day. Back in 2009 she was going through 14 diapers in one feed.
What I do agree with is the blood glucose symptoms that come with Reactive Hypoglycemia. This happens in late stage Dumping Syndrome. Caleigh gets three feeds a day. They are two hours long each. During that two hours she gets 390ml of formula. Caleigh's fasting glucose is 70s-80s, which is fine. When her food turns off at the end of that two hours her reading is 200-300, which is high. In just one hour after her feed is finished she drops dramatically to the 40s-50s, which is way too low. So Caleigh has been riding this sugar roller coaster for at least a couple of months now. Basically her insulin kicks into overdrive as soon as it gets high and doesn't know when to stop.
Something is going on in between the lines here.
Our Endo wanted us to start adding 1 heaping tablespoon of cornstarch to each of Caleigh's feeds. This is supposed to help slow down the absorption and regulate the intense drop. This tactic is considered the first natural step before trying the other two medications available. My blog post back in 2009 says that we tried this then. I don't have any recollection of this.
So I went to Whole Foods and bought the fanciest, non-GMO and organic cornstarch I could find. As soon as we started it, Caleigh started stooling nothing but liquid. That was yesterday. She stooled liquid 5 times yesterday. I talked to Endo on the phone and the Dr told me that it was a "coincidence of the Dumping Syndrome."
I. Don't. Think. So.
Today, per Endo's request, we will be trying 2 heaping tablespoons of cornstarch per feed, taking Caleigh's blood sugar readings and then calling them with an update this afternoon. I'm not having high hopes with this, but we will try it. I'm awaiting a call back from GI and our dietician as well today.
I know what the answer to this newest debacle is, but I'm not ready to believe it just yet. The quick fix is to slow down Caleigh's feeds and spread them back out throughout the day and night. Her feeds are going too fast for her short gut and her pancreas is overreacting. Plane and simple. Basically taking what we have been working towards for the past two years and starting over. Meeting milestones and goals don't come too often anymore. So the few goals that are big during this season keep us focused on the future and give us something to hold onto. It's pretty heartbreaking the compromises that we have to make sometimes.
For our family, there will always be little reminders that TPN and a central line isn't far away. That short bowel syndrome is real. That being grateful for what we have each day is more important than what we think we want for the future.