Frustrated and angry at pediatric endo about Afrezza

I am traveling today and away from home. This is probably why a daily event is causing me quite a bit of rage.

I am looking at my Dexcom share and at MyNetDiary. My 13-yr-old son is having one of his daily hormonal peaks. He is at school, dealing with it on his own:

It is nothing unusual. He has these peaks every day. Today, so far he has used 18 units just on this darn peak, and, of course, it is 50-50 that he will hit a sustained low after that: he is already there, and I am sure has used a lot of carbs already for his landing. I know that, given even very low odds, since it is a (multiple) daily event, it is a matter of time before he gets into a serious low-BG incident.

I am furious that I should have my heart in my hand every day looking at my son fighting to keep his BG under control when he could be using Afrezza to blunt these peaks at much lower danger to himself. I have already asked once for him to be prescribed Afrezza, to no avail so far.

I am angry.

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Doctors are not willing to prescribe it for him? What is the minimum age requirement for Afrezza?

@ClaudnDaye - 18 years old. Clinical trials for 4-17 years are taking place at the moment, but expected to take a year or two. Some docs are willing to prescribe off-label, but one has to be persistent in finding one.

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I know it’s no consolation but here’s Liam’s spike while I’m at work

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18 units is a lot! Poor guy. Hard to predict how that many units will land. I’m sorry you’re dealing with this!

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Thanks @michel and @ClaudnDaye for posting those “hormonal peaks”. I do not really get them but my son does. It is nice to see that this is “normal” and not some failure on our part.

I have the same complaint as @michel about Fiasp. It is not approved for under 18 yet in Canada and I would like to use it for spikes.

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That sounds frustrating! Seems like Afrezza could be really useful there.

That said, given that you’re working with injected insulin, do you think that perhaps you’re regularly overcorrecting while waiting for the insulin to kick in? I think this is where CGMs can be counterproductive—if you’ve taken a good dose of insulin to counter a peak or spike, in my experience best to ignore the CGM and the high alerts for a while (I’d say minimum 90 minutes) to give it a chance to kick in, otherwise the urge to correct further can be very tempting, resulting in an eventual low and more rollercoasters…

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I respect your finding. For myself, it is quite different. If my BG is running away, I have learned the hard way that I must hit it over and over (like every 20 or 30 minutes) until I see the CGM graph turn, or it becomes really hard to get back under control. I’ll probably have to catch the fall with some fast carbs, but if I don’t hit the rise frequently and really really hard, I end up with stairsteps higher and higher and higher. I expect to start looping within the next couple of months or so, and I’m keenly interested to see if the algorithm can do a reasonable job, and I know I may have to give the loop algorithm lots of time to bring things back under control.

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Maybe that just means your initial correction factor for high values that are rising just needs to be much more, since it needs to cover the initial high and the projected high? I think people (especially endos) often don’t realize correction factors for many people shouldn’t be linear and may need to go up dramatically as blood sugars rise and also to take into account where blood sugars seem to be heading. Regardless, in 20 minutes, you just can’t know whether the insulin you injected will do anything effective, so taking more because nothing changed doesn’t make any sense to me, and when I’ve done it, I’ve tended to end up with similar CGM traces, with a high plummeting into a low. I guess if you don’t mind the low at the end (which can indeed be easier to correct than a high), it’s not that big of a deal. Personally, I find lows pretty disruptive, and I also hate having to consume more calories if I’m not hungry, so I try to avoid them when I can.

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I agree, in most cases, if you are injecting insulin you need more than 20 minutes to know the effect. It took years before an endo told me I needed more correction insulin than normal, depending on how high my bg was starting at and how quick it was rising. Even Fiasp takes longer than 20 minutes to really kick in (yeah, yeah - I know - they claim it starts working in 2 minutes).

I would say this doesn’t hold true with Afrezza though. A correction often starts to work in 15-20 minutes.

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Absolutely true. During my 1st year I figured out that I have to cover the actual elevated BG, plus the rise that is still coming (“momentum” to loopers), plus the significantly increased insulin resistance that I experience when my BG is over 160. FDA-approved pump bolus wizards can’t handle anything approaching that. But my CDE (a long-time T1) was well aware of it.

In 20 or 30 minutes I won’t know if the correction is enough, but if it is possibly enough I will see some indication of a response in the CGM graph. I’m not expecting the graph to turn down yet, or even turn from a concave rise to a convex rise (viewed from above), but it should begin to respond (2nd derivative decreasing, possibly still positive). If I don’t see any response and I don’t add more insulin, my experience has been that I will have much more trouble regaining control because of even higher BG, compounded by much worse sensitivity to insulin.

That happens to me sometimes too. But for me the alternative is a BG rocketing higher and higher, becoming increasingly difficult to get back under control. I’d much rather nip it in the bud with 3 units plus 3 more in a half hour, rather than 3 units followed by 8 an hour later, followed by 10 more an hour after that, and an additional 8u IM after waiting another hour, which is the kind of scenario I get into if I don’t jump right on it.

After 20 or 30 minutes I won’t be able to predict whether the correction was enough to bring me back to 120. But if I see no response in 20 to 30 minutes, it is excellent evidence, in my body, that the correction was not enough.

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I see it acting far faster than that sometimes… it really depends if your bg is still skyrocketing, then it takes longer to slow the train and turn it around… if it’s just high and pretty steady I see it start dropping within just a few minutes with afrezza

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