Questions from a Newbie Pod-er's Mom

Hi, fellow Pod People. My 11-year-old daughter (dx'd 01/24/2014) began Pod-ing as a first-time pumper on June 5, so we're less than a month out. Our CDE started her out with what turned out to be way-too-conservative doses/settings based on what she had been using via MDI. If memory serves, on MDI my daughter's BGs ranged anywhere between relatively infrequent lows in the 60s/70s to rare mid-200s. The only time we've seen anything in the 300s was at dx. Her first (and only) A1C on MDI was 5.6. Two weeks after starting OmniPod, her A1C was 5.3. I found that unbelievable because during those first two weeks, her BGs were not so good. That's an understatement. For a Mom who has seen only 2 BGs over 300 (300-something at diagnosis and 600-something before I.V. insulin kicked in), her BGs just after starting with the OmniPod freaked me out. She was in the low-200s to low-300s about 75% of the time. And our endo instructed me not to correct the highs because she wanted to be able to see the patterns more clearly in order to make dosage adjustments. After about 16 days of minor adjustments that left us wallowing in the 200s-300s, I could no longer deal with these highs. So I read Pumping Insulin by Walsh and Roberts, took things into my own hands, and went ballistic with all of my daughter's settings. Since making these mega-changes a little over a week ago, things have been MUCH better. Daughter is using just a bit more insulin on a daily basis (18-22 U per day), her basal/bolus ratio is reasonably close to 50/50 (had been more like 85/15 before changes) and her average daily BGs are infinitely nicer (110s - high 120s). My question to you is this: What are your target BG settings? (Our daytime setting is 110 (120) and nighttime is 140 (145). I just want to get an idea of what "average" targets are if my goal is reasonably tight control. Thank you in advance for your input!

first of all GOOD FOR YOU! for taking control, no offense to your endo team but if you waited for them to ok every decision things would never get done and your daughter may start thinking poor control is acceptable, they say essentially type 1 esp is a self managed disease every dose of insulin needs a thought and we see the trends in our children sometimes better than a professional. podding has its challenges but I find the new gen is a lot better, once in a while we will still see Jacob trending way to high for no good reason and have to change his pod, ? overused site, slightly kinked cannula? as a parent I find a tad more frustration and worry with pumping over needles because of the new variables but 3 years for us and he would never go back, it is soooo much easier for them to manage with their friends with a hand held devise rather than a needle. anyway Jacobs target is 100 during the day and 125 overnight. we had an issue with the new gen and insulin on board with him being a frequent eater it was accounting for way to much on board and wouldn't bolus enough, we worked around this by setting his insulin action for 2.5 hours his doc doesn't love this but it works for him even with that if we see he still has a lot of insulin on board we may add in some to his next bolus again this works for him as he is 15 and eats a lot and often no carb restrictions for this boy I pick my battles and make him feel like he is in charge but suggest this probably isn't the best way to eat once he is done growing. if you have any other questions feel free to ask! amy I feel the need to say one more time nice job mom!!!!

1)My CDE also started with conservative settings. The first few days on the pod
had much lower TDDs which she says are due to (1) better absorption versus MDI and (2) hangover Lantus (or other long acting insulin). After a few days, my usage went back closer to what it was before.

2) I too was unhappy with the initial settings and took things into my own hands...I read both "Using Insulin" and "Pumping Insulin" and make all my own adjustments now. I believe it is the only way to get good results. If you wait to talk to the endo or CDE for every change, it will take months. An educated diabetic (or parent) needs to learn how to self adjust insulin. It's a little bit hard to get used to at first as we are taught that "Doctors adjust drug doses", but insulin is a drug that must be used as needed (just as your body does) to get the right BG level.

There are probably people who are too technically or mathematically challenged to look at their numbers and calculate the right ratios or basal doses, and for them thye may need assistance, but honestly, it's not that hard.

3) I target 95 day and night. I do wear a CGM 24 x 7. It is a great help in making pump adjustments.

4) I had the same experience as Jacob's Mom with the way the new pod calculations of IOB work... and worked around it the same way - reducing the insulin duration and making judgement calls.

5) As you may have seen the ADA lowered their A1c target for children to < 7.5% instead of 8.5%.... so I would say you are doing well to be aggressive as you are if she does not have too many hypos.

As your child grows up, you will be able to teach her how to self-adjust and she will be far better for it.

P.S. The BG target is going to depend on how much the patient's variation (variance or standard deviation) of BG is ... If you have a wide variance, you can't set too low a target as you will overshoot too many times and have too many hypos, conversely, if the variation is small, then it's safer to target a more normal blood sugar. Controlling variance is one reason some of us reduce carb intake - less carbs = smaller boluses = smaller potential errors. I do understand that this is not always possible with children and it is a continuous tradeoff between making BG management easier and quality of life (i.e. eating what you like)

First thing I'd recommend, is don't let it stress you out so much. Averages are good too, but trying keep things low all the time will end up frustrating you silly. Plus, super tight control can lead to weight gain and anxiety.

I stick to about 120 all day long. Even at night, though with an active lifestyle, I easy vary each night from a steady 90, to well over 200. I've keep a solid 6.5 A1c overall, so I'm not too worried. I've had 4.x A1c's before. It was not a good experience, as the lows came far too often and I had lost the ability to sense lows.