Saturday, January 24, 2009

Week 36 - So far in a nutshell

I'm back. I've been a bit busy (moved house, schools changed, business trips, etc.) and I couldn't find the concentration to sit down and write. However, for the benefit of our selected public, I'll put what has happened so far in a nutshell -and it's all good-:

1) A1c: When diagnosed, 12.1% - When treatment was initiated, 8.5% - 3 months later, 7.1% - 5 months later 6.5%. We are not doing a low carb diet, we just count carbs and compensate. Intake is at least 150-200 grams of carbs per day as we are told they are critical for growth. Diet includes pizza and icecreams, and other than the nuisance of injecting after the meal and spacing the meals 2-3 hours -to keep better control of the BG measurements and allow the insulin to act-, there are no substantial differences with the other kids diet. Yes, no candies or cookies in between, only at fixed times.

2) Blood glucose: Mostly on the low side, occasionally going high: we measure 4-5 times a day, and some four measurements a week will go over 200, one over 300, the rest between 50 to 150. Some lows also, but they can be traced to us overcompensating with fast insulin. Following the regular schedule, we had no longer hypo episodes, not a single call from the school, no worries when he goes to bed. The last 2 weeks of treatment there was no physical activity (PICC line in place), and we had to put a lot of extra insulin, but after that we went back to normal.

3) We just made the second set of infusions in December. This time we've put the PICC line and it went more than smooth. In a previous post I've said that I was not too hot about it. Well, of course, I was a bit concerned with general anesthesia, but after my 3-4 hours of concern, the boy enjoyed some 15 painless days, with no need for needles at all.

4) Insulin intake. For basal (slow) insulin, if physical activity is there, 20 units a day. Without, about 30. Compensation with fast insulin still at 1 fast unit for 15 grams of carbs. Doing the dose/weight ratio, we are yet at 0.5 to 0.8 units/kgr. Physical activity makes a big difference here.

5) A word on the people of Research Dallas (the center where we are doing the infusions): SUPERB is an understatement. If you want to understand what personal, compassionate medical care and concern means, you have to see them at work. I won't say more, otherwise it'd be several pages of praise.

Conclusions: For what I've talked with other parents, it seems we are having a way easier time keeping the right values of BG. A1c, which is critical to preserve his body in good shape, looks rather good without having made strong diet adjustments . And we've really forgotten the stress of the lows. No effects of the treatment were noticed throughout all these months. There was one cold that got him real hard, and kept him in bed for a week, but I cannot trace it as a direct consequence of the treatment, though I've dutyfully reported it to the brains behind the operation.

I'll wait a little while for the next post, to see if there are some news after the second set of infusions, or if things keep doing the same.