FUDiabetes

Three months pumping and really frustrated

exercise
hormones
insulin_pump

#41

All the same - 6.5 mm at about a 45 degree angle.


#42

Give tresiba a try. You have nothing to lose and a lot to gain potentially. You had better results with Lantus than with the pump, tresiba is light years ahead of Lantus. The pump will be right there waiting for you if you want to put it back on… it’s not going anywhere. It’s not “giving up on it” it’s trying something else to see if it works better. The pump doesn’t have feelings, you wouldn’t be cheating on it.

Or if you want to stay with the pump you’re really going to have to learn to stop over-tinkering with it. Which I think may be really tough with your personality…


#43

Is it possible to use a pump for bolus and injection for the basal?

Better question - is that a potentially valid approach or is that just looking for trouble?


#44

It’s possible but it’s kinda pointless. Without being able to adjust your basal, the pump loses most its value.


#45

We do a split basal (1/2 pump - 1/2 long acting) during sports where we have to be disconnected for a long time (2-3 hours at a time, up to 3 times a day for tournament weekends).

When we do, we cut the pump basal by 50%, and use a long acting to make up the other half. That gives us the ability maintain the use of the pump function (including decreasing basals), but stay disconnected safely for long periods of time without having to think about it much.


#46

I forgot about untethered. That’s a definitely a useful thing to do when you need to disconnect.


#47

@Michel,
Another thought. How about turning the reins completely over to him for a few weeks? See what he can do. Don’t make any decisions for him, just be a safety net, nothing else.

People have a much easier time doing it for themselves than doing it for someone else.

Without a doubt, first-person control is easier. He has all the signals that you are not able to get.

You could take the best and brightest team of endos and they’d never be able to do for well-controlled, motivated, and intelligent diabetics what he/she could do for themselves.

You may not think he is well-controlled right now, but he is intelligent. And I bet he is motivated.

I’d be willing to bet he’d be an awesome D beast in 1 month. Really, I will bet you. Name it. Tell him my money is riding on him, and that I have total confidence in what he can do by himself (and any advice he wants from FUD, of course).


#48

I second Eric’s suggestion… let him not only take the reins but make the decisions about if he wants to continue with the pump or take a break and try mdi etc…

Think of how much better you’ll sleep when he’s demonstrated that he has a handle on this himself… and how good it will be for his confidence


#49

He is a teenager: he already makes all his own calls during the day, sometimes with some consultation with us in the evening when we are together (and sometimes not). We only make decisions ourselves in the evening while he sleeps, so that he does not have to wake up (In fact he does not wake up to his alarms at night). As a teenager, he is always short of sleep, of course.

He does a very good job on his own already. He has a better gut than us. His mechanics aren’t perfect but they are pretty good: he is 80% there or better. he still makes slight mistakes in stacking decisions or exact timing, but he is doing a really good job, really.

However, right now, we are all having a hard time in dealing with his BG.


#50

Well then clearly that’s what you have to work on. He’s a young man, not a young child who can’t fend for himself. I absolutely guarantee you that as soon as he’s the one who has to wake up and adjust his blood sugar it will become necessary less often rather quickly. Someone on here, @Chris maybe? Had a good trick to put the dexcom receiver in a metal bowl full of marbles or something to amplify it’s sound. The vibration of that thing is pretty violent and you will find many more possibilities to wake up a hard sleeper with it than you would with a phone.

So we’ve identified several things that I think you should do immediately and I hope you take them into serious consideration

  1. consider a pump vacation and try MDI basals (my personal opinion is that tresiba is vastly superior to any other option, and even vastly superior to pumping for many people)
  2. increase his upper limit so you’re not waking up to correct at 120, that’s not worthwhile or beneficial to his or your health and is counterproductive…
  3. increase his personal responsibility level to include managing his own bg at night.
  4. if you continue pumping reduce the use of temporary basals.

and more

I believe all of that is good advice that will improve the health and well being of your entire family


#51

I probably am not explaining well what we are facing. I knew it was going to be very difficult to explain, because I don’t really understand what we are doing wrong.

Every day we try to ascertain what the right basal is. We always start with the basal for the previous day. We don’t just change it. If we find out with reasonable evidence that the basal is wrong, then we change it, typically 10% up or down. But determining that reasonable evidence takes time. So he may spend 12 or 18 hours on the wrong basal before we figure out that yes, it needs to go up or down.

We already do that.

We already do that. I don’t understand why you and Sam think that is not the case.

Our problem is that it does need changes every 2-3 days, sometimes after one day. We don’t change it unless it clearly needs changing.

For instance, if he has recovered from sickness but has not exercised, he is at +30%. If he goes from that to full exercise mode, he reaches -30% in about 7-10 days. As he varies his exercise intensity (and ?? what else, I am not sure), he goes up and down in between these two levels. He does not go up or down 30% in any one or two days (unless he gets sick of course), more like 10%, rarely 15%. But these +/-10% show up a lot, several times a week, possibly 4-5 times per week, and each time the change comes with painful adjustment, because it is so frequent that we are never at a stable level it seems.

If he did not need frequent basal changes, we would not have the problem we are facing. Th frequent changes required are probably our most significant issue, although not our only one.


#52

I cannot do that. He already gets less sleep than he should, because he wants to do too many activities and he has demanding classes. He freqently is not in bed before 11:00 due to activities and homework. It is simply not possible to expect him to stay up at night.


#53

Michel, this is a recipe for disaster. You should not be changing his basal frequently like this. This is what you’re doing wrong.


#54

I was pretty much flying solo by the time I was 8. Parents were a safety net, but I made the call on dosing.

When I was 12 I was sailing by myself in the San Francisco bay. No CGM, no BG meter.

When I was 12 I went scuba diving without my parents along.

My parents didn’t love me less than you love K. They knew what needed to happen to let me prepare for life.

Everything I can do now is because of what I did then. Learning is tough, but it is better than the alternative.


#55

Sam, before we were on the pump we hardly ever changed it. We only change it because we must. It is not a choice on our part. We only change it when it is clear that it is not the right one.

Our problem is that we need to change it often. If we did not, the rest would be much easier. If he goes on a sustained low for 2 hours when not within DIA even after taking 25 or 30 carbs, it is pretty clear that his basal is off.


#56

And this is why the pump seems to be a poor fit for you. Before you had the possibility of changing it constantly you didn’t have the need…

And before the constant adjustments you enjoyed better control. From my perspective these dots are not hard to connect…

If, for whatever reason, with a pump you have to adjust basal constantly and are up all night and your control is not as good as it is even with previous generation MDI technology, then why are you pumping? It’s not working…


#57

You are right. Right now it’s not working.


#58

Well I’m glad you’ve acknowledged that… you’ve been given a lot of good advice above. Eric, myself, and others have “led the horse to water” as best we can.

My recommendations are:

Give the pump a break and try tresiba. If you don’t want to try tresiba then go back to Lantus, even it was better than pumping for you. If you insist on pumping stop adjusting his basal. You’re doing it wrong.

Increase his upper alarm to 150 (minimum) at night. The fewer highs you correct the fewer lows you create.

Start shifting responsibility to your son at night. You’re not always going to be there to sneak into his room and nurse him. There will come a time he doesn’t even want you to. And the number of years you’re around to support him will be greatly reduced if you don’t start finding a healthy balance on all of this.

We can do this.


#59

I maybe had fewer exciting solo adventures than Eric, but I did go to sleep-away summer camp every year starting at 11 (and generally these were not diabetes camps, so none of the adults around had much if any training for that), and I was pretty much doing my own diabetes care without a CGM for several weeks to a month each summer. I also remember that the main reason I wanted to learn to give myself injections was so I could sleep over at people’s houses, and not be tethered to my parents overnight.

That said, I think my target as a teen was 100-140, and I’d consider 80 to be verging on a low if anything, in part because without a CGM it might well be. Gives you a lot more of a buffer. Also, if I went low overnight, I’d wake up on my own, eat something groggily, and go back to sleep (occasionally doing something like going down to the kitchen, taking out ice cream and leaving it out on the counter in my half-asleep state…). Sometimes I kind of liked my middle of the night snacks, ha. And if I ran a bit high overnight, I’d run high, and find out in the morning, and then try to figure out how to prevent it in the future rather than losing sleep figuring it out in the moment. In fact, that piece can be done way better today, since if you wake up high, at least you can look back and see exactly how it happened.

So yeah, I think if you maybe stopped worrying about getting it perfect for now overnight, aimed for a higher overnight target (>100), didn’t continue to monitor the CGM after bedtime except for low alarms (and then everyone can go to sleep and just get woken up if need be), and transitioned to getting him to wake up himself for overnight lows (which would hopefully then be more infrequent), all of that might help, especially re: getting sleep. Control can be tightened up again, but right now seems like the balance needs to swing in favor of sleep and sanity.


#60

Correct… it is also not possible for you to. Neither of you has to. neither of you should be up all night. If adjustments are necessary in the middle of the night, which should be quite rare if you’re doing it right, it should be a matter of roll over grab some glucose tabs, chew them up, and immediately fall back asleep…