Interesting use of NPH!? Glad it worked well! Beware, however, that effects of sickness may go away just as suddenly as they appeared. I’ve had any number of cold or flu cases when my insulin needs would increase dramatically even before I felt sick, and would go away back to “normal” or (even worse) to less-than normal needs before I’d be back to feeling really well. Plus, based on my (very long) experience with NPH, I’d not say it’s necessarily predictable or easy to deal with. If I were you, I’d probably stick to bolus corrections based on the knowledge of IOB, and the CGM curve. YDMV.
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I’m so sorry your son was sick. Take heart that you are doing a great job for your son and that, even if he may or may not thank you for it later, he will have a better shot at a long, healthy life thanks to your love and vigilance. At least, that’s what I tell myself when I’m up all night watching Dexcom.
For us, sick days are just the worst, andn this season is particularly brutal because my son gets at least one cold every 3 weeks to 1 month. I know your son is on MDI, but what we’ve done to tame sick days a bit is to track everything and then look at his TDD on days when he was running so high, then increase basal roughly by that amount or a little less around the clock… we also do increase it more or less based on the time of day he tends to run high (mid-morning and late afternoon are especially killer when he has a cold, though usually the night is pretty normal). It’s not perfect for sure, but I just don’t see how else you could prevent sticky highs other than getting in front of the cold before you see those highs happen.
ETA: An example: TDD = 8, Basal per day = 4. Sick day TDD = 12, Basal per day = 6
That means you’ll have some risk of lows as the body recovers though. So when I’ve got that higher basal rate I’m much more prepared to catch lows and will back off the basal as soon as we see more than one low in the day that seems to occur when IOB is less than 0 (that’s a sign that basal is too high), or just more than two lows.
Being more aggressive with basal does mean less sleep for sure. On those nights, for us it is helpful to have one parent monitor half the night and the other take the other half, even though on a good night we will typically just have one parent in charge all night, because it’s not fair or healthy for one person to get 0 hours sleep for days on end.
Honestly I hate this season. I wouldn’t be surprised if our son’s A1C is 0.5 higher during the winter solely as a result of all the random infections he catches. THE WORST.
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@WestOfPecos, I know that it has been difficult trying to figure out what to do when your child is sick. I have to say, this topic worried me greatly. I know that you have worked very hard to achieve stellar control with your child. But I also want your child to be safe from hypos. And while you did the right thing when advised to look into NPH (you called your doctor), you then chose not to take his advice. And that worried me.
I think if you polled the many members here and asked about NPH you would find many that absolutely hated the variability of NPH. I used NPH, initially as a basal insulin and then at my endos direction at night to control dawn phenomenon. I know that in my case the onset really varied and sometimes it just would not work or would cause unexpected drops. This why I was concerned
I think it can be hard for us to weigh the risks and benefits of different strategies. Yes, running high blood sugars can be bad. Over the long term we all know that it can have consequences. But hypos are immediate and the consequences can be dire. I just wanted to urge more caution as using NPH added further variability into what was already a volatile situation.
I’m glad that you seem to be through the worst of it and came out only slightly worse for the wear.
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@Dragan1, that is what @Brian_BSC was mentioning. What predictability and usability concerns did you see?
We have absolutely no experience with NPH, since we have only used it for the last two nights. So far it’s been perfect for us - but it is concerning to me to read your concerns and Brian’s.
I do too!
@Tia_G, I remember well when that was the case for us. It took us till my boy was about 8-9 to get out of this phase. Now we expect 2-4 such episodes per year, including, almost always, one in fall when back to school.
This is a great tactic! I love the idea. We have increased his basal when he has been sick (and this time too) but did not think of this. We can’t be as aggressive as you are because of MDI vs pump - but this is a great quantitative way to analyze it (quantitative analysis always appeals to me:-) ).
The good thing is - it will get better (in frequency) as he gets older. I thought it would never come but it did for us.
Still, for my 12-year-old boy, right now his sick TDD for a mild cold is triple what it was before this hit. Not pretty.
Thanks so much for the great suggestions, and also for the moral support - definitely timely! I spent a lot of time sailing in my life (that’s how I paid for college, mostly sailboat deliveries etc.), and I remember well how the worst hours of the night are the 4-6am time slot (“dog watch”), before dawn, when you are desperate to fall asleep but mustn’t. It is also when you have the darkest thoughts
I never like to go against my doctor’s advice. In fact, I have changed GPs in the past because I did not trust their advice. But, at the same time, I don’t let my doctor make decisions for me: he is my expert and valued advisor, but I am the decision-maker.
I must say, thougth, that the diabetes advice many of us get seems to be so far away from the day-to-day reality of diabetes. I am slowly coming to the thought that, possibly, only endocrinologists who are also T1Ds really understand the reality of treatment. I hope I am wrong.
For instance, when I discussed with the “endo on call” the possible option of using Afrezza to blunt sick peaks (I wasn’t really expecting him to agree, btw), he spent 10 minutes explaining to me that inhaled insulin had failed - I wasn’t even sure if he was aware of the continuing existence of Afrezza. In fact, the very large majority of endos writing on the subject write they will not prescribe Afrezza because there are no benefits to the patient. We don’t use Afrezza because my son is too young (and, of course, I am worried about possible lung issues) - but I must say that this is so much against the daily experience of the people who use it, and who can live a more normal life with it. This dichotomy, to me, is typical of how endocrinologists do not see treatment in the way patients see it.
I think that endos are accustomed to dealing with the “average” patient population. When they are facing highly motivated families (we have radically changed the way we live, including our jobs, to be able to treat my son as well as we can) who are willing to learn and work as hard as they can to treat this sickness as well as can be, they fall back on the generalities they give to everyone else.
Possibly they just don’t know because they don’t live it.
This worries me about NPH. @Dragan1 voiced the same concerns.
So true. These are difficult decisions. I guess I decided to use NPH because his CGM sensor is working well and because I was planning to stay up most of the night anyway. We did it again last night with similar results. I figure that, if I am up during the high activity portion of the curve, I will be able to take care of any potential low as needed. We are very preemptive with both lows and highs, and start acting early on, particularly for lows.
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WOW! that’s crazy. For us it’s about a 50% increase.
But, you know, if your son is still in honeymoon, this crazy increase could make sense. When he’s healthy his body is producing most of the insulin he needs to keep his BGs in check, amounting to, say 55% of his total insulin need. Say he needs 100 units per day and his body produces 55 of them, you deliver 45. Then he’s sick and his insulin needs double, that corresponds to his body providing only 27% of his total insulin need. All of a sudden he needs 200 units per day, his body produces 55 of them, but now you need to deliver the extra 145. (Not to mention that the sickness may be impairing his beta cell function anyways.)
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He was probably referring to Exubera, the first inhaled insulin. It failed more from a profit or marketing perspective than from issues with its effectiveness. It was too expensive for Pfizer to produce.
Have the guy spend a week with Sam. I’m sure he could convince him that it is effective…
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Once upon a time, in a previous century, he was right. If he hasn’t learned anything since then, he’s the failure as a doctor, not the inhaled insulin.
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The biggest problem with NPH is it’s variability, especially in the smaller doses used in kids. The peak can vary & can occur more than once, which could be why your endo was concerned about stacking Novolog (at breakfast) on top of the NPH. If a 2nd NPH peak coincides with the Novolog peak, you may find yourself either force-feeding a tremendous amount of carbs or possibly having to rely on glucagon. Lows from NPH can be incredibly stubborn. Absorption can vary a lot with different injection sites. You can get around this a bit by always injecting in the abdomen, but you can’t change how fat (or lack thereof) affects absorption.
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Mind you, my experience with NPH was in the last century, well before CGM days, so I’d not outright blame just NPH unpredictability for various bg control difficulties I had, but I have no doubts that it contributed substantially. I’d concur with what @tiaE said above.
Variability of NPH aside, I still do not understand conceptually why you’d want to use NPH in this situation at all? It’s like setting a ticking time bomb that may or may not be necessary, and that may require gobbling some middle-of-the-night carbs for no good reason as far as I can see. Why not just set CGM alerts, at however aggressive thresholds you like, and just sleep through the night if no action needed. or surf through with bolus corrections if need be. Just a friendly discussion, I am not criticizing at all - you’ve researched everything and you’ve done really well - which is great. Hope your son gets out of that cold soon.
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I totally understand why you are asking. If I had not seen the curve I would ask the same thing. The night before, the boy was faced with an unrelenting glucose wave, not a peak - a constant high for about 10 hours I think. Nothing could quash it. We injected every 60 to 90 minutes yet could never be in control.
The main issue, for me, was that Novolog’s activity curve was not long enough in duration, and resulted in his having to inject way too often. Possibly we weren’t bold enough to inject high enough doses? When I have a minute, I will post the curve for the last 3 nights, and ask for suggestions - first night without NPH, and 2 nights with.
EDIT: I guess I never made my point clear. The attraction of NPH was that it would remain active for the whole night - although its activity would not be flat. For us, it seems to have worked well the last two nights - although, admittedly, they were not as bad as the first of the three.
Another point to make. In the olden days, the standard was to inject both NPH and R insulin in the same injection. You would draw up the R first, and then the NPH into the SAME syringe. What a horrible idea that was. Why would they advise that? Were people that afraid of taking a shot?!
So if you had both insulins being delivered into the same spot, that was a recipe for disaster. And I suspect a lot of the bad rap NPH got from the early days was a part of that bad advice.
That bad advice actually still exists in the form of the 70/30 premixed NPH and rapid stuff they still sell. Again, that is a bad way to do it.
I would always recommend you deliver NPH in its own injection, not combined with another insulin. For me, it became a much kinder and more predictable insulin that way.
Since we alway say “YDMV”, don’t be afraid to try, test, analyze, and draw your own conclusions.
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Have you seen the scary horse needles of ye olde diabetes care? I would try to cram everything I could into one of those bad boys so I had to do the absolute minimum number of injections necessary.
Not only have I seen them…
That’s the way I used to do it!
So maybe that was the point back then, you wouldn’t want to inject more than you had to, so they told you to combine the stuff.
Back when I started, the standard of care was one shot a day, NPH and R (regular) mixed. Good times, eh?
Got it! I can see how you’ve exploited NPH to your advantage - sort of like a high temp overnight basal - nice. Is your boy taking Lantus once or twice a day? In any case, will certainly be interesting to take a look at the curves if you get a chance to post them.
So far just once a day: we had not noticed an upward BG trend in the late afternoons until last week’s sick peaks.
@Dragan1 , here is the first curve: Friday night, without NPH.
Total insulin used that night:
- 1/2 Lantus = 4U (for 12 hours)
- Novolog = 18 U in 8 injections, roughly every 1 hour to 1.5 hours.
Total 22U
As a comparison, his normal TDD when he exercises is 16-18 (but he has not been to sports for a week because he is sick). His TDD these past few days has been close to 50.
Below, by contrast, is the next night (Saturday), with Lantus and NPH.
Total insulin used that night:
- 1/2 Lantus = 4U (for 12 hours)
- NPH = 8U
- Novolog = 1.5U
Total 13.5U
So, clearly the glucose problem was not as high the 2nd night, but the control was so much easier! I am not posting the next night because it is essentially the same as this one, also with Lantus (10U) and NPH (7U), and a single injection of Novolog to squash a sick peak.
So far, for my purposes (a night-long basal), NPH has worked really well the past two nights.
I am somewhat concerned by your reports about NPH variability and that of others. Hypo risk, of course, is always my biggest concern.
EDIT: as I look at the second curve, i am realizing that there may be something to explain because it is not obvious:
- @ 6:38PM he injects 5.5U because he wants to have dinner but he is starting a big sick peak
- @ 8:15PM he takes advantage of the large down trend from the peak to have the first half of his dinner.
- @ 8:30PM he boluses for the dinner carbs given his post peak IOB (it made no sense to prebolus, since he was going down fast - post-bolus was a better option)
- @ 8:49PM he eats the second half of his dinner
But dividing the dinner in two, he made a fast moving BG more manageable. He did not want to wait forever for dinner:-)
I also forget to add the 2 glucose corrections he had for NPH low trends around 11:00pm and 12:00am.
Hope this makes sense.
Nice report! There’s a lot of density to this data. I’ll make more than one remark. First off, let me congratulate you for excellent sick-day management! Then, your first night was not nearly as bad from the glucose line itself but the repeated corrections do give you pause. I’m usually to rage bolus intensity after seemingly not moving the line down with several attempts. The glucose, however, looks like it topped out in the 160’s, not high as bad hypers go. You had nothing that touched 200 (11). Some people would count this as a fair day.
I know staying awake all night is a high price to pay but let me tell you, I’ve fought this battle and didn’t land well and endured an 18 hour roller coaster at the end. It can always be worse!
I’ll have some NPH comments later.
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While we didn’t combine NPH & R, we did combine with Novolog. We followed directions & rarely questioned back then but I’ve often wondered if we would have had an easier go of it with individual injections.
@WestOfPecos I have to say that for a sick night, even the first night was very, very good. When you mentioned highs from illness I envisioned 200s+. I freely admit I had to give up the all-nighters long ago. Thank goodness for the pump & Dr Ponder’s sleep bolus.