My 6-yr old was Dx’d 7 months ago, and is doing great on MDI (last A1c was 5.8). Novolin N with breakfast and dinner, and that’s it. Endo says A1c is what matters, not what she calls “excursions” due to BS and insulin peaks not matching up exactly. WRT complications, I certainly believe her, but what about how it feels? My daughter doesn’t seem to have much awareness of her highs or lows at all, and I read Justice Sotomayor’s autobiography: if 2 shots/day is good enough for the Supreme Court Justice, it’s good enough for us; if it ain’t broke, don’t fix it; and all that. Still, I’m hoping someone who experiences it directly can tell me: Would my daughter be more comfortable if she switched to a pump, so her averages were the result of tighter, smaller, individual bolusing, rather than of that bigger arc that covers her 12 hrs or so at a time? Or should I leave (much better than) well enough alone, and not mess with this really good thing we have going on right now?
If it is working, give it time and hopefully she will soon be able to feel when she is low and possibly when she is high. HB A1c is important but not everything; it does give a real good view about what has been happening, on average, over a three month period. What is important is that she does not “bounce about” with extreme swings between low and high over the course of a day - if you chart BG results keep an eye in standard deviation. I’ve had a 5.7 A1c for the period where I’ve had individual BG readings approaching 500 and also at times about 40; YES, in those instances I take immediate corrective action so that I don’t remain at those points.
In the 1970s I was in the group studied during development of “glysolated hemoglobin”, now called HB A1c and the doctors couldn’t quite figure why my A1c was so “good” while having so many highs and lows; it was determined during a week’s in-clinic stay in 1973 that I’m brittle. This was at the time when it took several hours to get a BG reading, even when in hospital.
You ask if two injections per day of long lasting insulin can work for her - yes, it apparently is working quite well for her. But don’t lock your thinking there as her needs may very well change over time - my diabetes is still evolving in its 59th year. For about 12 years I took one shot of NPH per day, and then two smaller doses of the same NPH per day for the next 10 years before starting MDI, with various refinements un insulins, for the next 25 years. Insulins have improved and become much better during my many years of usage - I’m now in my 11th year pumping and use less insulin per day and eat plenty trying to gain a few pounds and maintain a good A1c.
Having her start on a pump is a difficult decision for her, for you and for her doctor. I wouldn’t rush it unless her doctor strongly advises. Keep in mind the social as well as medical issues. Right now, she does not need to bother with bolus injections/infusions during the day; at school that may have an impact on her. Also, she would use fast-acting insulin in the pump that when combined with unexpected exercise and skipped meals ["… I didn’t like the school lunch today"] could result in a “low” that needs treatment.
My best wishes for you and for her!
I hope that I didn’t ramble too much.
This is great, Dennis, thank you. Honestly, I wouldn’t even be asking, but the pump community is so enthusiastic. Her endo chose injections deliberately to keep things simple – the less active management she needs to do during the school day, the better – and it really is working well, as far as I can tell. We’ve never seen lower than mid-50s, and highs only rarely break 200 (though once when she was getting an infection she was 348 before lunch, even though she seemed fine and it completely resolved itself: by dinner time, she was 111 with no intervention at all, even with her usual lunch and afternoon snack, since this all happened at school. Presumably, she’s still honeymooning, and thank goodness for that!)
It’s just that I’m a mom, and I worry that even high-100s might not feel good (of course we’re always striving to avoid lows), and that’s the promise of the pump, right? To your point, her endo is actually discouraging of the pump: injections are working, and there are fewer opportunities for things to go wrong this way. I’m totally on board with both those points.
I just wrote because I wanted someone to tell me how it feels. Because she really can’t, at least not yet.
Here’s the rub - A1C is a great tool for keeping an eye on average blood glucose values over the last 3 months. However, that is an AVERAGE. You could have two different patients with the exact same A1C value of 6.5, which equates to an average blood glucose of 130 mg/dl. One may have individual readings that are very stable like 120-80-110-140, while the other may have numbers like 65-180-220-75, which are not ideal. So for your doc to say that A1C is what matters is not the whole picture. Stability is more important than a good A1C with wild fluctuations. Granted, we all know they come with the territory some days, but trying to minimize those big highs and lows is the name of the game, and a pump helps greatly with that. My overall control and ability to quickly correct highs has been great in the 13 years I’ve been pumping, which I was never able to achieve with MDI. With that said, pumping brings on a whole set of responsibilities and it is more complicated, so I can understand why parents would be reluctant to start their kids on one. Ultimately, it gives you so much more control and freedom, so the sooner the better, in my opinion.
You ask what your daughter will feel when she is high and low. That is hard for anyone but her to know and for her to get to recognize - but I can tell you how I feel but keep in mind that her body is not like mine; I weigh 151 pounds, almost 6 feet tall, eat about 234 grams of carb per day and maintain A1c between 5.7 and 6.5 for many years while [now] using on average 21.7 units in Novolog per day [my 84 day logs uploaded yesterday.
Based on what I feel, I suspect she will certainly feel great when her BG is between 100 and 200 and is she is eating a healthy diet she will be full of energy. When her BG goes over 200 she may start to feel sluggish and tired - when I say over 200 I don’t just mean a one-time reading caused by an unusual event, like her birthday party.
When my BG gets down into the low 70s, I notice that my concentration and then vision gets disturbed; I read a lot and some evenings if my BG is dropping I find myself rereading the same paragraph over and over. By all means, let her teachers know that your daughter is a person with diabetes and what appears to others as “day dreaming” may be the sign of low blood sugar and that a non-critical reminder to her to check her blood would be appropriate.
She should be permitted to do any necessary blood testing at her desk and take appropriate treatment without being showed out of the classroom to wander about finding a restroom - time is of the essence especially if she was so low that someone noticed.
There was a series of articles posted by Joslin diabetes Center [joslin.org] last August geared toward students with diabetes, their parents and their teachers. You can also get good guides and information packets for teachers from the JDRF and ADA.
It is most important that she learn how she feels when her blood sugar is dropping or is low.
The problem is that the symptoms of highs are so different from one person to the next, so we can’t really tell you what she’s feeling like. Some (most?) people don’t feel anything at all until they’re very high (300’s).
Personally, I have pretty bad symptoms with even mild highs (140-170), that significantly affect my daily functioning (low energy, no focus, mentally+ physically sluggish, major stomach acid reflux). So I try to maximize my time in the normal range.
But it’s a lot of work, and represents some added danger also; I wouldn’t recommend it to anyone who doesn’t have a need. I would recommend you test her bg a lot for a few days and observe behavior, mood, attentiveness, mental capacity etc. to see if there is a bg value above which she is affected.
Let us know how it goes
I have to agree with Angie, as a parent that has done both MDI’s and a pump I’d lean toward the pump. Just as A1C is effected with highs it is also just as effected with lows - so a good A1C is only as good as the day to day control and I definitely feel we’ve seen much tighter control using the pump. Sure there are differences between the two, but I wouldn’t consider one more difficult than the other.
My opinion aside - it’s always best to do what works for you and what you and you daughter are comfortable with doing.