Hi. Our 10-year-old son has been on the Minimed pump for 2 1/2 years and admittedly we like it much better than doing injections all the time and we love having the freedom to eat whenever BUT . . .
after all this time, we still can't bolus based on the pump's "recommendations." We are still constantly giving a little more insulin or giving a little less insulin because of upcoming or recent exercise, varying emotions, periodic stress, a recent high or low, etc. ARE WE THE ONLY ONES STRUGGLING WITH TRYING TO HAVE THE PUMP WORK WITHOUT EXPENDING SO MUCH MANUAL "GUESSWORK?"
Our son is also on the Medtronic CGMS and our endo is constantly trying to change the pump settings to get our BG's in the target range, but it's a never-ending battle. Our son is very active and at the pre-puberty stage which I'm told makes things very difficult. His A1C is high 7's or low 8's -- but it's a TON of work and I feel like we guess so much of the time.
Why do I feel like we're the only ones having to work so hard while utilizing the "latest, greatest technology?"
Linda, in my 31 years dealing with this, it's almost always 50% science - 50% art. The pump can't come close to doing what your mind can do.
Are you utilizing the pumps patterns? a pattern can be set up if he has a super active day versus a sitting around day. A simple pattern of 50% of his normal basal can be implemented so that when he's going to have a full throttle day he is already set up.
If the activity is more spoadic, like hectic afternoons or mornings, with the other half of the day being normal, then temporary basals are more effective (wellllll for me anyway) if you are utilizing temporary basal be sure to switch 45 minutes before the big activity.
The technique that works for me is a scale from 1 to 10 that rates how active I am. 10 is full on exhaustive activity. 1 is going for a nice walk. I take that scale, multiply by 10, and use that number to cut my basal rate % - up to and including 100% (suspend). If that's too much math then use somethign like this - mild activity 25% reduction, activity like playground stuff - running from swing to slide... 50%, swimming 75%-100%, boomers (or Chuck E. Cheese's) room crazy nuts, Suspend.
Bolus is always a guess. If I am eating lunch but know I am going to be very active right after, I cut my bolus by up to 50%. This can mean real trouble if I am not as active as I predict but it is better than having a bunch of bolus insulin on board and then being 35 in an hour.
I know it's tough but you'll be surprised how good you can get. Don't forget to let him make his own decisions too, because in 3 years or so he'll probably want full control and you'll probably be better at it than him - it can be a struggle. good luck.
Thanks so much for your advice! I especially like your activity scale. My husband and I are going to try that.
To answer your question, we ARE using Patterns A & B (one is 50% reduction and the other 25% reduction in insulin) for use just as you cited. We've been using temp basals primarily for times when Ryan's ill, but I can see where that would be handy for portions of a day that are out of the ordinary.
I'm so relieved to hear that you feel bolusing is always a guess. You're correct in that we are getting good at guessing, but I keep feeling like we must be doing something wrong based on our nurse educator always saying "just do what the pump recommends." I wish we could do what it recommends except that my husband and I KNOW that the pump doesn't know the current situation like we do. Just knowing that what we're encountering is "normal" makes all the difference.
The scary part (or I should say MORE scary part of diabetes) is preparing Ryan to take the reins. I know that's what it all comes down to, but as a parent and with so much at stake, I imagine it's tough to let go.
If you are using 50% reduction on Patternt A through all day, then this pattern doesn't make much sense (except if you have old pump which doesn't support % temporary basal)...
As for me... and basals. I am adjusting ratio's according to my TDD (total daily use) and I manage quite fine... I have to calculate everything manually though, since my pump doesn't support anything... I have old MM 508 for now, since I am having insurance problems (not with me)... Maybe you need to adjust ratio's on pump and then you will get more realistic help from pump...
What are your current ratios's, age of your son and TDD?
I'm so relieved to hear that you feel bolusing is always a guess. You're correct in that we are getting good at guessing, but I keep feeling like we must be doing something wrong based on our nurse educator always saying "just do what the pump recommends." I wish we could do what it recommends except that my husband and I KNOW that the pump doesn't know the current situation like we do. Just knowing that what we're encountering is "normal" makes all the difference.
The scary part (or I should say MORE scary part of diabetes) is preparing Ryan to take the reins. I know that's what it all comes down to, but as a parent and with so much at stake, I imagine it's tough to let go.
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haha wow a cde that only offers "do what the pump recommends"... wow. I do not have to guess that your cde is not diabetic! As far as activity levels in children go, you are doing it right. more or less insulin with respect to activity... I am afraid that's all you can do. Having said that, if you find that for school days (where activity levels are structured) you are consistently high or low then you should recalibrate your basal, corrections and carb ratios. You can strive that for "some" days, the pump calcs are good. you can pick what your "some" days are - maybe for school or other "most prevalent" days.
I only really override my pump suggestion if I know I am more or less active than my "base case day" (for me, base case is"work" with mild activity like walking that I do most days), or if I am sick, or if I have eaten something super high in fat and need to intervene. If I find that my AM basal for a given meal is consistantly a tad low I will make a calibration change in my pump. It's not hard to do, and for me it makes my days easier, because I do my "base case" day usually 5 out of 7 days a week. I bet Ryans days vary wildly, but this will change with time.
Also, please find support from as many parents, and other folks like us with diabetes - Ryan will and must be his own caretaker, and IMO, the sooner the better. It'll most likely be a little painful, and it will surely be frightening, but God Bless and good luck you can do it.
If I find that my AM basal for a given meal is consistantly a tad low I will make a calibration change in my pump. It's not hard to do, and for me it makes my days easier, because I do my "base case" day usually 5 out of 7 days a week. I bet Ryans days vary wildly, but this will change with time.
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I meant AM Bolus. sorry jdrf editing is near impossible once you hit "post" ;-)
When I first went on the pump (Medtronic Minimed 722) a few months
ago, together with my diabetes team we went through about 2 hours of
calculations to get it right, and I have not had to do one manual bolus yet, it
was spot on. However, a friend of mine went through the exact same process but
was having similar troubles as you seem to be, she had to come back in another
few times to get the adjustments right. Goes to show how there is no perfect
way of working these things out. Of coarse it would be great to not have to do
any manual bolus's, so keep trying to get it right with your doctor, you can
only improve with there help. And you're right about being in a very difficult
age. Your A1C is pretty good considering, so just keep up the work, and I'm
sure things will get a bit easier to control.
It really depends on person. One person can use same basal profile (some call them basal pattern, basal rates, I called them profiles), for longer time and some not. It depends on person, but for most people this profile changes regullary: every few weeks, or for some daily (I discovered on myself that I have different profiles on week days and different on week ends, and overall, this settings last for few weeks and then change). Since I am quite new in still in stabilization phase (or I hope so), I need to adjust profiles regulary, which is probably the best way to go. You can either change (adjust) profile when you see problem (BG outside target range, which is 5-7 for me) or you can do test of basal profile (this can't be so easily described, but in short, you don't eat in certain part of day (no food no boluses) and you test regulary in that part of day (for example every hour, or every 1.5 hours), so you can see how your basal goes... test needs to be repeated, for same part of day and for all parts of days that are out of alignment, but NOT ON SAME DAY... If you are a child or teenager, all basal changes must be supervised with your doctor...
With correctly set profile/pattern, you can go on with our live, with just correctly bolusing (with correct carb count of course) and only do extensive BG checks when you eat something new. But everything is different for each person (stress, activity, personality, age (hormons)...).
Yeah, our CDE was a real sweetheart! She had absolutely NO empathy for the patients and what their parents were going through trying to learn and deal with diabetes. Luckily, our doctor deals directly with us via email now and I believe they have this nurse doing insurance forms in a backroom somewhere. She no longer deals with the patients -- at least not us (thankfully!)
Ryan's activity does vary tremendously from day to day and throughout a given day. However, that isn't the hardest part. What is difficult at this age (when the kids are really too young to handle their own care), is when the parents aren't with the kids for 6-8 hours at a time (at school). It's like trying to drive blindfolded! You send your child out the door in the morning figuring certain things are going to happen during that school day, but then something unplanned or unexpected occurs (or doesn't occur), and the best laid plans are out the door. We do much better in the summer when we are around Ryan more. It's a tough situation, but I know in time not only will Ryan's patterns become more "stable" but he will be in control of the pump when activity and moods are changing. Right now it's like we have to be fortune tellers on top of everything else.
I know that we'll get there -- I am appreciative to the "veterans" such as yourself for making me realize that my frustration is "par for the course" and just part of dealing with diabetes. I can't thank you enough for your support.