Teaching Dallin the Ways of the Starch

Posted on 09. Oct, 2007 by Jillian in corn starch, Glycogen Storage Disease, Glycogen Storage Disease Type 1A, hypoglycemia

It’s official, Dallin is 9 months old and has begun cornstarch! We spoke with Dr. Weinstein today, and he encouraged us to start giving Dallin 5 grams of cornstarch in 2.5 oz. of Prosobee- and see how his blood sugar handles it. We started out testing him every 15 minutes, then every half hour, and now we know that his is consistently able to go an hour and fifty- two hours before the next dose of cornstarch. Woo hoo!!!!!!!!! Tomorrow we get to up it to 8 grams and we’ll see how he does. Cornstarch not only helps him go longer between feeds (during the day we had to feed him hourly) but it is also much safer. Instead of his blood sugar dropping 2 points a minute, it goes down much more gradually. So, if we are delayed getting him a feed, there is much less damage.

Next week we will prove even crazier than we already thought we were. If all goes well, we will begin… 24 hour cornstarch. This is only particularly nuts for us because that may mean getting up every two hours at night to feed him, every three hours at night to feed Jonny, and every 4 hours for Mark and Ethan. Oh, don’t forget we still take Luke (the 25 pound “puppy”) out every 4-5 hours as well. Can we say “night of the living dead”? Fitting for Halloween, don’t you think?
This time last year, Jonny was also 9 months old, so, we began the same process. The difference? Jonny’s blood sugar went totally crazy, and he had many, many, many explosive poops with just 3 grams of starch. Apparently he was among the 20% of GSD babies that can’t handle cornstarch by 9 months. I thought for sure I was doing something horribly wrong, and so we gave up for a while, but tried again the next month- several times. Each time it was a “poopy” experience. We were finally able to get him on 24 hour cornstarch when we went to see Dr. Weinstein last May. It was still difficult to believe that that much feces could come out of such a small cute kid, but at least his blood sugar held, and the diarrhea gradually lessend and eventually dissapeared over the next few weeks. The trip home was considerably better hypoglycemia wise, but I really could have done without changing his diaper that many times on airplanes and in airport restrooms. I have a feeling the other travelers felt the same.