Isn’t Tresiba only approved for patients 18 or older? I may be wrong about that, but that’s what the constant bombardment of TV advertising during the middle of Vikings has led me to believe!
You could be right. I don’t know. Any doctor, however, can over-ride that with an “off-label” prescription. @WestOfPecos’ son is 12.
You are correct. I had it prescribed “off-label” for my 14-year-old.
I read your tresiba reports and found them fascinating. I have talked to my wife about it already (I actually emailed her your thread), but have not discussed it with my son’s endo yet.
Right now, my son is on a single basal injection (Lantus) per day, in the evening. Because he is into so many sports, different practices run different days of the week, it is pretty hard to adjust to what his practices do to his basal requirements. Long Swim practices (up to 2 hours at a time) are the worst, and reduce his basal needs for a couple of days, often till the next session. Meets, other sports and games are less affecting of his basal needs the following days. But he runs from 5 to 10 units of Lantus per night, depending upon the frequency of practices, intensity, and who knows what. I have not been able to measure the Lantus drop-off for him (he does not go high before breakfast, although he is insulin-resistant/glucose sensitive at breakfast), so I think it may last a full 24 hours or more for him. He is tall and skinny. a pretty typical swimmer, but he is into many other sports (soccer all year round, volley ball spring/summer, skiing in winter, etc). He also spends much of his free time outdoors winter and summer.
We are still playing with a single basal rate - but I can see that, within a month or two, we will have exhausted all options with that. In the past month, he has had 2 night time low (very mild, slow drifts) and probably 60-80 day time lows. On the other hand, 1 night out of 3 he has a 2am peak around 140-145. Of course, this could well be because we don’t adjust his basal injection quickly enough to new circumstances. But we already adjust it 2-3 times per week. It is so easy to make a prediction mistake with the circus of all his sports practices. And we adamantly do not want to make changes to what he does because of diabetes.
Pump: we applied for an Omnipod with UHC - but we were just denied last week. Omnipod seems to be the only pump he can use, unless we are willing to see him disconnected hours per day (sometimes a 1/2 day for a swim meet or a soccer tournament, or skiing in a really cold day), since pretty much none of his sports allow for the use of a non-tubeless pump. So we are bracing for a long process.
Have you done any reading about the “untethered” regimen? That’s where a person takes a basal injection(s) every day in addition to wearing a pump. The basal duty is split between the basal insulin injection(s) and the pump basal rate with the basal injection carrying the larger load. I tried this regimen myself for about a month. It is completely doable and produced acceptable results for me.
For your son, this would mean using the pump for nutritional and correction boluses as well as during the time when wearing a pump is not precluded by the activity, like swimming. I went on a beach vacation and was able to swim and hot-tub without any undue concern about being disconnected from the pump. This may be an option for your son. It’s a little more work but offers a great deal of freedom.
By the way, from many comments I’ve read over the years about Lantus, I am skeptical about it lasting 24 hours. Dr. Bernstein is adamant about taking two or more doses of Lantus each day.
Just wanted to mention this, from our conversation this morning. I really loved nighttime NPH for the way it tailed off in the morning. It would help me manage morning BG really well, because it had just enough remaining when I woke up, but was slowly on its “way out” so it did not drop me later.
I know some don’t like it, and I know NPH has been talked about extensively here, but I really like it. It’s possible that the NPH tail would help the post-breakfast spike.
Lot’s of graphs and things in this post:
very old tudiabetes NPH discussion
Just for clarification, I absolutely would NOT give up Lantus for NPH, I am suggesting looking at using them BOTH.
But saying that could get you kicked out of this forum.
That 2 AM peak you mentioned…might have been somatotropins. That’s about the same time my daughter’s growth hormones hop on board.
With all the frequent and significant basal dosage changes you make, I would definitely recommend a pump. Too bad they denied your son the OmniPod system (my daughter loves hers!), but I’m not surprised being as how Medtronic copped an “exclusive contract” with UHC (at least that is my understanding of the issue). G_d forbid patients have any choice in the matter…
I love the graphs. I am rather data driven:-)
Athough, of course, in this case these are somewhat “imaginary” graphs. No data points or stats. Rather, idealized concepts. Still - graphs are good!
I saw it mentioned on the forum here, but had not looked into it until @Eric2 mentioned it to me this morning. So I am in research phase.
I have seen many comments to that effect as well. So I have been looking for an insulin drop off early evening (i.e. an evening rise) in his CGM graphs, but I don’t see any. Possibly I am not reading it well enough.
I was thinking of that as a possibility too. He is just starting the beginning of a faint darker shadow of a moustache, and he has been growing like CRAZY.
The contract is not even supposed to apply to kids under 18. There is a difference between what they say and what they do.
How it is ethically defensible to have an exclusive contract between an insurance company and an equipment provider I cannot fathom. Very slippery path that does not lead to righteousness.
Is your son newly diagnosed? If so, it could mean that his residual home-grown insulin is making the Lantus appear to be working a full 24 hours. It’s also possible that the single daily dose of Lantus is responsible for the late morning lows. Lantus is supposed to be ideally “flat” in its activity but the package insert does show a small peak around 6 or 7 hours:
WestofPecos, I am in agreement with you 100%. There is something so very broken, and more importantly wrong with how health insurers (in actuality) control how a physician is able to practice medicine in this country. They are not only able to control what we do (unless a patient is independently wealthy and can pay for everything out-of-pocket without so much as a flinch), but they force us to practice substandard medicine. I cannot have an increasing number of my patients on medications that I know will be more effective and/or will cause less or even no side effects because insurance will not cover the cost or will cover the med at a higher tier, which for many of my patients means they still can’t afford it, even with a pharmaceutical company copay discount card. They will not cover many of the lab tests/imaging studies I believe are necessary or they will only cover them once every few years even if I require that information more frequently in order to make sound medical decisions. (And I have no incentive to order unnecessary lab tests because I do not get “kickbacks.” I must have missed the “how to get kickbacks for unnecessary diagnostic tests and procedures” class in med school because I honestly believe these “kickbacks” don’t exist. And every physician I know must also have “missed this class”…) But when there are bad outcomes because physicians can’t practice medicine the way we were taught to, are health insurers sued? No, physicians are because we have “deep pockets” and because we didn’t “do the right thing because we clearly don’t care about our patients.” It has become almost unbearably frustrating to do my job. High standards (the “standard of care”) must be met or we can be fined, sanctioned, sued, even lose our licenses. But it becomes more and more difficult to meet this standard of care when health insurers fight tooth and nail every step of the way to cover the costs of the most basic medical care.
Rant over. Stepping down from soapbox.
I can really hear how frustrated you are. Many of my friends in the medical profession, who are passionate about what they do, feel the same way.
My field is high tech - I have looked at health systems from far away, as a mine field that is too dangerous for the unweary to enter (I mean in terms of new ventures). But as I look back and feel the need to give back to society, and, of course, as I look at what is important to my boy, I wonder if there are valuable ventures (by that I don’t mean valuable to their shareholders but to society as a whole) that could make a difference to the entire field - rationalize some of the inefficiencies and blatant injustices in the system, which I could help bring about.
Stepping down from box too:-)
He has been diagnosed for less than a year, so, yes, it is quite possible. It is a bit hard to say because we tend to eat low carb (without being fussy about it), and he is into so much physical activity, that I am not 100% sure if his low insulin usage isn’t due to these two factors instead. The normal honeymoon equation does not apply well to him. Over summer he seemed to have finally come out of honeymoon, but our increased reliance of lower carbs and his increased number of sports hours have made his insulin use shrink to a shocking degree.
I think everything else held equal, less insulin use is better. My level of control and BG performance goes way up when my insulin use bottoms.
Don’t step down. We need people like you (and RG) firmly ensconced on that box. I went back to grad school in my late 30s because I felt like I wasn’t challenged and wasn’t making a difference in my previous career. I lost a lot of time and money doing that, that I’ll never get back. But, now that I’m poor in my 40s, I am doing something I feel is important. And important for more than just me and mine, if that makes sense… Totally worth it for me.
So stay on the box, please.
I am so glad you found the right thing for you to do - not an easy pick by any means. I look back and wonder if I should have done the same earlier - creating value for the economy is a good thing, but it is not as satisfying as doing the right thing. Having been raised with little money around the house, I saw economic success as a goal at the time. Now I see more clearly, and, thank god, it is not too late for me. Possibly the old zen saw about stages in life is true:-)
Although I will say that, for the first time in my life, I find money a good thing when looking at being able to pay for my boy’s medications regardless of what the insurance company says if it comes to that. Until this year it never had importance in our life.
That and my first born son’s college expenses I guess:-) They both arrived at the same time.
Great success! Congratulations, @WestOfPecos !