My daughter's numbers have been really hard to control the past week. It is really frustrating and depressing when you try so hard and the effort doesn't reward you. Last night she was having a low at 62. SHe wanted some cereal with milk so we just used that to treat the low. 28 carbs. In 15 minutes she was at 95 and still hungry so I made another 28 carb serving and gave her insulin for it. She was at 250 an hour later.
I have noticed the Ping doesn't want to give more insulin if she wants to eat more than what she was dosed for the first time. If she eats and then wants another 25 carbs then when I use the EZcarb function it recommends no insulin because she has insulin on board I guess. Maybe I should just dose her with the normal insulin to carb ration when this happens and ignore the pump recommendations.
The other thing that has me down is that I see there is a new drug study for newly diagnosed people. I sure wish we could have participated in a study like this a few months ago but now she is beyond the 3 month limit. I looked for studies for her then and couldn't find anything.
I'm pretty sure being frustration goes along with being diabetic ! You sound exactly like what my mother use to sound like when I was younger. I was dx when I was 7 and my parents did a fabulous job controlling my diabetes, but there were times where things just didn't make sense. Hey, life happens, right?
Have you tried what the endocrinologist call the 'diabetic 15' ?? Try giving your daughter 15 carbs of what she wants (cereal, juice, milk, etc) and then wait 15 minutes to test her sugar again. It may not look like a lot of food but give it a try. I usually wait between 15 to 20 minutes and see what my sugar is at that point. If my blood sugar is still going down, then I'll eat another 15 and then wait another 15. It can be annoying and I'm guilty of not being patient but it does work. Give it a try!
First off, don't get too frustrated, it sounds to me like you're doing all the right things, and as any of us will tell you, sometimes the numbers just don't make sense! That said, the numbers you mention sound about right to me. I'm on a CGM, so I've been able to see (close to real-time) the effects of food on my blood sugar. If I don't take insulin a half-hour before I eat, then an hour after I eat, my blood sugar will be high. Period. Two hours later it will be lower, (with no additional insulin) and three hours later it will be back down completely. (Usually. See comment above about sometimes it doesn't make sense!)
What I've noticed about the bolus-wizard (minimed's name) function is that it uses insulin-to-carb ratios that were arrived at without taking basals and 2-hour-old insulin into account, so maybe it's underestimating a little, sometimes. But before adjusting these ratios (with the doctor's help of course) I would see what the blood sugar looks like with the Ping's suggested doses after 2 hours and again after 3 hours.
Trying to get perfect numbers a worthy and lofty goal, that can drive you nuts if you let it! I'm an engineer, so I approach it analytically and mathematically, and every time I think I have my body's system figured out, I'll go too high, or too low at a time I wouldn't expect. These are the times I have to focus on the rest of my life! Your daughter has a bummer condition and a great mom!
The EZcarb bolus calculators can be a serious crutch sometimes kinda like the situation you explained.
For it to tell you not to bolus when you just ate extra carbs is counter-intuitive if your active IOB didn't account for the carbs in that second snack. Common sense tells us extra insulin might be needed. I think people get over-reliant on those wizards sometimes and get under-bolused. Don't be afraid to bypass the wizard and do a manual bolus.
And regarding the trials, don't beat yourself up about that. Think of it this way, you could have made one of those trials and then been given a placebo the whole time. Those trials may have prolonged the duration of her honeymoon, but none would cure her of diabetes or make shots/finger pokes go away completely. In fact it'd probably be more sticks/pills/trips to the dr. In the end, you're doing the best thing possible by treating her diabetes in the here and now instead of putting your hope on a trail that may not produce any results.
Lastly, crappy diabetes days happen to the best of us. My sugars last night from 8p to this morning hovered between 320 to 140 and never went any lower despite me giving TONS of insulin and it was driving me nuts. Diabetes is not a textbook disease and those kind of days just prove it.
Frustration doesn't solve anything, keep your head up, and keep chugging along!