endocrinologist update 5/12

When I came in this morning the nurses said James’s IV had started leaking in the night, so he didn’t get his insulin and his sugar level went back up. I was hoping this would mean the IV wouldn’t be in his head anymore, but no, they put it on the other side of his head.

He only gained 1 gram yesterday.

Dr. Desrosiers was back today and revised and clarified some of the info we had yesterday after the MRI.

• James has neonatal diabetes (diabetes mellitus), an extremely rare condition (he has only seen 3 babies with it in his 25 years of doctoring). So although James may never be a great scientist, his case may contribute something to science. This is not the insulin receptor problem, and not a pituitary problem, but a straight out pancreas problem–he is making zero insulin. This is still the explanation of his smallness. It’s possible it could be transitory and go away in a year, but he said not to count on it.
• Dr. Desrosiers didn’t see any major problems with James’s pituitary hormones, so he thinks it’s not a problem now although it may well become one as James gets older. He said again that all those hormones could be replaced, although the puberty ones are difficult. James’s high sodium levels and urinary output that made Dr. Barr think the pituitary wasn’t working are consistent with just high blood sugar according to Dr. Desrosiers.
• When they get James’s ballpark insulin dose figured out (looks like .6 or .7 mL/hour) and he has enough fat, they want to put him on Lantus, a 24 hour insulin shot, and later a pump that can be fine tuned throughout the day.