So my son has hyperinsulinism. He makes too much insulin, his blood sugar drops. We don't know why he makes too much insulin. Biopsies of his pancreas show that the cells are relatively normal. Or maybe he makes an ok amount of insulin, but the insulin receptors are being filled by some unknown antibody. This is the premise that we are working on. It explains why prednisone (and initially IVIG) is so successful at keeping Calvin's sugar up. Besides prednisone, we keep his sugar up with g-tube feedings. What a wonderful device the g-tube is. When we were in the hospital we overheard a father reasoning/arguing/cajoling/ begging/yelling at his (about) 8 year old daughter. He was saying that they could go home as soon as she took her medicine. She was in tears and this conversation went on for hours. It's nice to not have to have these arguments. Don't want to eat? Fine by me. We can skip the biting, chewing and swallowing and go straight to digestion. It's great to have increased control over my toddler's nutrition. Up until a few weeks ago we had been putting pediasure through the g-tube. It was pretty much the only thing we would bolus him with, in order to bring up his sugar. We had been thinking about his sugar (it's the number one thing that occupies my mind all the time anyway) and whether there could be some ingredient that either when added or avoided would help stabilize his sugar. Dawn, my brilliant and resourceful wife, considered how the pediasure was helping. It seemed that it was causing his sugar to spike, but perhaps not giving him a sustained lift. He would soon drop and we'd have to bolus again. So we thought we'd try doing food through the tube. Our first attempts involved about 10 ingredients, including corn starch. The thought was that corn starch is a long lasting carbohydrate that would give Calvin a sustained boost. It worked well at first, but after a day or two fared no better than the pediasure. So we considered the ingredients we were using. It turns out that the first ingredient in pediasure is high fructose corn syrup. So we've eliminated that from his diet, all corn products in fact. We've been at this for about 2 weeks. I don't know how well this is really working. Calvin just had a low in the 50's a couple hours ago, but before that number I was pretty happy with how this is going. His sugar doesn't go as high anymore, but doesn't go as low either. His graph stays flatter. He's mostly between 70 (lowish but not dangerous) and 100. Here's what's in the mixture: chickpeas, peanut butter, banana, peach, almond milk, agave nectar.
All day Friday I had been noticing that it was getting harder and harder to push the food mixture through the g-tube. Finally, around 11pm it was clogged and nothing was going through. This is terrible for us. Without the tube we have no access. If this didn't get fixed it was going to necessitate a late night trip to the ED. Trust me, late on a Friday night in the Albany Med emergency department is not where anyone wants to be. In addition to all the unpleasantness of being in the ED, I've never seen more prisoners in one place. Fortunately for us we did have an extra Mickey Button kit and with only a little bit of struggle Dawn was able to replace the clogged one with a new one. She is so capable and resourceful, it's one (two?) of the reasons I fell in love with her. It's been 4 days now and new g-tube is working out beautifully.
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