Simeon and I met with his endocrine doctor this afternoon. She had no new news of course. Just a follow up from his hospital stay and how he's been doing since. She said based on his labs it is definitely nothing hormonal. We don't have to go to that doctor anymore, so that's a little good news.
Ironically enough, Simeon began having an episode of low sugar as we arrived at the hospital. Well, that's when I noticed it anyway. He had to have more labs drawn while we were at Riley for his metabolism doctor. He wanted him to fast for them. The nurse told me about 4 hours would be good so I fed him breakfast and we started our busy day. It had been about 4 hours exactly since he'd last eaten and his sugar read at 47 on his meter. They're not 100% but it was still too low and I could tell by looking at him, which, quite frankly, scares the hell out of me. Even though I know that it can be fixed almost immediately I hate it. His sugar has never dropped so rapidly before. Even in the hospital on his controlled fast it took the whole day to get to 40. Today it took 4 hours. I am really hoping that we can have an answer after these tests. I rushed into the building and up the elevator so that they could get his blood drawn while he was still low. They will definitely get to see whatever amino acids they're looking for in optimum low sugar status. Even if they don't find anything in particular and we end up with a final diagnosis of ketotic hypoglycemia, today proved how important it really is not to let him have any kind of fasting. It's not like we don't take it seriously, but it's never been "real." He's had late lunches. He's missed snacks. He's always been fine. Except twice, now three times. What makes this particular fasting period any different from a previous late lunch? I guess trying to make sense of rare disorders is just too much to ask. At least he has a simple solution. Eat.