FUDiabetes

Three months pumping and really frustrated

exercise
hormones
insulin_pump

#1

It’s been almost three months since my son started on the pump, and I feel we have never had less control than now. Some of my frustration is due to the lack of sleep, and some is due to the worsening control.

We started the pump 2 weeks before school. We wanted to start much earlier, but our endo clinic made some problems prescribing enough Novolog before we had gone through all the pump clinics. As a result, instead of starting at the beginning of summer, where we would have had a chance to establish a good baseline, we started right before the school year, which also means right before the fall sports seasons, and right before all the extracurricular activities.

If we had a single problem to deal with that I can clearly identify, it would be much easier than it is. Instead, we are facing a constantly varying basal as the sports schedules change every day, along with, several times per week, glucose reactions that don’t quite make sense, such as, for instance, varying activation time for insulin.

The first problem we face is basal needs that vary from -30% to +30% (or much worse when sick, of course). We are often off by 10% or more, and take a while figuring it out. When my son is on his own, he has a harder time figuring out basal vs bolus issues, and, as a result, spends more time low or high. The reason for the high variance is that, every day, activity schedules and sports schedules change. One day we will have regular PE in the morning, a dance routine for the school musical at 4:00, and a two-hour swimming practice before dinner. The next day there may be nothing. The day after there may be a different set of activities, at different times in the day. Refueling in a timely manner is not always possible during the day, so post-exercise lows also play a role.

The second problem we have is that my son has post-exercise lows from some ports practices, such as swimming, but post-exercise highs from others, such as biking.

The third problem we have is the fact that both ICR and CF change with big changes in basal needs. Since we are often a few hours behind tracking the right basal, we can be off on meal bolus and corrections.

The fourth problem we have is that my son now appears to need, about half the mornings, feet-on-the-ground insulin: an immediate and significant bolus when getting up— but not every day :frowning: We have not figured out if there is a correlation with something else.

The fifth problem we have is the fact that, occasionally, his insulin activation time, which was very reliable so far, can run 20-40 minutes late. Again we have not figured out when and why.

And, of course, we still have plenty of random hormonal peaks day and night, probably two per day average.

The first consequence is that our control is much worse than it has been in the past. We have always felt that we understood what happened and why, even when we got caught and made mistakes. But there are some times now when I don’t know what is going on. Because of the quick varying basal, the changes in ICR and CF, and the random insulin activation time problems, sometimes I don’t even know if the problem we face is a basal or a bolus issue.

The second consequence is that my wife and I don’t sleep enough. With the random sports schedules, it is rarely possible for him to have his last meal of the day early. He typically injects his meal bolus around 6:30 or 7:00 because that is the earliest time he can do it. His DIA is about 5.5 hours, but he often gets a hormone peak in the evening, so that means another large bolus around 9:00pm, meaning a DIA ending around 2:30, before which we typically can’t lock reliably on a basal for the night. Often, it takes until 4-4:30am before we have a stable basal for the night. That does not leave a lot of time to sleep.

Clearly, we have too many moving parts. I feel that we were too confident about being able to deal with it all. We should have been a lot more careful about adding moving parts one by one. I am now thinking about how we need to approach this differently.


Changing basals :thinking:
#2

@Michel, Big breath. You have a lot of things moving at once, and you have introduced a new variable (pump sites).

We recently have switched from a pump site every three days, to a pump site every two days to reduce the pump site issues and variability. Pumps take time to understand how they differ from shots, and with that many moving parts I am not sure I would want to try and understand it.

If it were me, I would loosen your range, allow your son to ride a little higher for awhile, and slowly try to ratchet down your control. Also, personally, while I admire your dedication to your son and keeping him in range as much of the night as possible, I think you may need to take a break for a few weeks and let the nighttime highs happen and get enough sleep so you take care of yourself. Just set the Dexcom high alert to 300 for a week, and only treat the high highs…

Another issue I forgot to mention is that when my son is stressed from school and sports he makes more mental mistakes with his insulin, usually this manifests itself as extra microdoses he delivers when he doesn’t feel like the insulin is acting quickly enough, and usually results in additional lows. So, now that I think about it I think you have two additional variables to deal with.

Just my 2 cents.


#3

You are right. My son has the same problem. For instance, for the first time since diagnosis, last week he logged a meal bolus but did not inject it—he must have forgotten to confirm the bolus. He was short of sleep that week. He has also done the same thing as yours: extra microdoses.

How can we fault these kids though? They are doing such a great job at a very difficult task.


#4

I’m on the run here today so I can’t reply in any great deal of depth, but can you explain how the frustrations you’ve outlined above compare to what your experience was like when using Lantus in similar situations ? Such as during sports seasons, etc…

We will help you get to the bottom of this and get some sleep… the pump was supposed to make your family’s life easier, if it’s making it impossible then we may have to reach the conclusion that it’s not a good fit for you and your son. I understand there’s probably a lot of hesitation to reach that conclusion since you had such high hopes it was going to make life easier…

there are a lot of ways other pumpers here can advise you how to fine tune your regimen… personally I think you need to go the opposite direction and make far fewer adjustments with the pump basals and more with bolus and or food… but we will see where the conversation leads us…


#5

Very sorry you guys are going through this Michel. Reading this makes me very afraid for Liam and the years that lie ahead for us. Our thoughts are definitely with you guys during this rough time. The “growth” stages make managing our kids so difficult, but I agree with you that we should never blame our kids. This is already more on their shoulders than most other kids will ever have to deal with so we just have to remain supportive, encouraging and try to foster in our kids the importance of being “on the ball” where D management is concerned so that they can be around much longer than the two of us. It’s so difficult to diagnose a problem because “growth hormone” causes our kids bodies to react in so many unexpected ways that, honestly, people who aren’t dealing with this in addition to D management will never really understand the vastly different world of care, frustration, and worry that is present every day.

I would only say don’t allow this to make you go without sleep as much as you can control. If you’re not rested, you won’t be making the best judgement calls yourself. Do the best you can do, day by day, meal by meal and let those bad meals and days just roll off of you if at all possible. It’s the only way I’ve been able to keep my sanity.


#6

There are a lot of things I see in your post that should be discussed. But the first thing is that adjusting basal for a high or low is a recipe for frustration. You treat a low with carbs. You treat a high with a bolus.

For exercise, cut the basal while he is exercising, and then after he finishes turn it back on and give a bolus to replace the insulin he missed. But there shouldn’t be constant adjusting.

A higher constant basal rate will help you deal better with high BGs. Basal is the foundation of the house. You want a good solid foundation. Don’t turn it down unless he is exercising.

A lot of the variability can be from different amounts of exercise and insufficient carbs. If he has days of no activity, it would help for him to get some activity on those days.

Anyway, there is a lot of stuff to talk about, but those are just a few of the things that I wanted to mention. Sam has a very good thought here:


#7

I don’t fault them at all. I think both of our son’s are doing an admirable job in the face of a difficult disease. I would also point out that although our targets for success are a bit different, both of our young men are trying to live unlimited which is an admirable goal.

As my son has approaches 15, he is pulling away from his mother and I in a predictable way. As such, we have loosened our A1c goal to just be under 7, and let Cody learn to live his life as he thinks right, with help available any time he asks. It has been hard, but in the scheme of things inevitable.


#8

Hang in there, @Michel! I don’t have any suggestions as we’re struggling with Samson’s BG in a big way right now (the subject of a new post shortly), but just to say that your challenge seems quite challenging indeed – so many sports, a boy with hormone surges at various unknown times, and a much tighter target than most T1Ds ever have – it’s really amazing the level of control you’ve managed to maintain thus far.

I personally am not as anti-pump as @Sam but I agree that maybe injecting Tresiba for basal and then using the pump so that your son can have easy bolusing for meals or during, say, swim practice might be worth it at some point if you can’t get things under control with the pump.

From what I’ve heard, the angled plastic cannulas (like in the OmniPod) tend to have more issues with absorption as well, compared to the metal needles, so it may be that this is adding to your variability. In which case, a basal injection might eliminate that background variability.


#9

It’s not that I’m really anti pump… I think for some people they’re god-sends. I just think they’re not a good fit for everyone… that and I think they’re archaic technology, but for some people they serve their purpose extremely well, for others they create more problems than they solve


#10

@Michel, what is the nighttime range you are using right now? What is the low and high at which point you will take action and/or make a correction - at nighttime?


#11

@Michel All I can say, never having used a pump, is to just loosen up a bit. Understand that with the foundation you have given Kaelan the only thing that’s bound to kill him is old age.

I’m sure you know that I’ve not had the best control over my whole 46 year tenure with diabetes, but it’s been good enough to not have had any complications.

Yes, YDMV, but I’m not suggesting you get sloppy. But a slightly higher target will go a long way towards ensuring not only your sanity, but also your son’s.


#12

@Michel, for a growing, super-active kid, managing bg is at least an order of magnitude more difficult then for any of us adults. I have nothing but respect and admiration for how well you and Kaelan are doing! I can only echo what a number of others have already said above in various ways:

  1. You and your family need to find a way to sleep and rest well - that’s clearly a high priority. Set your goals not in terms of some super aggressive bg targets, but in terms of uninterrupted sleep.

  2. As much as I prefer pumping for myself, I have to say that cannula+tissue interactions bring in another variable that could be behind at least some of the inconsistencies you are observing. In your situation, I’d definitely consider going back to MDI, at least temporarily, especially given that a predictably flat basal insulin is now available.


#13

Just reading your comments is making me feel better already! It is a great feeling to get all this feedback and concern from my best D friends, thank you!!! I don’t mind admitting that this sequence of events has brought me down quite a bit: I feel I am letting my son down :frowning:

I will reply in depth tomorrow.


#14

It seems that the basal adjustment I needed to do with Lantus was much less. Last spring and summer, we did not have to make daily adjustments to basal. But it could also be that his body is different? AS he grows and changes, his D changes too, every few weeks to months.

But we also appear to have other issues coming up that were not coming up before. With an increased basal range, we also have changing ICR and CF which we did not have before, that leave us with too high or too low meal and correction boluses. Also, feet=on=the=ground insulin is something we did not have to deal with, or occasionally changing activation duration for insulin.

I am not there yet but it is definitely in my mind.

This may have been a misunderstanding. When you asked about how often on temp basal, my reply (“almost all the time”) is because we have ONE stable basal profile and adjust his daily basal by going up or down on temp basal, for 12 hours at a time. His basal is set for the middle of his range. Any day he can be -30% or +30% or anything in between. It lasts between 24 hours and 48 hours, except that it takes us a while to identify the right level, so the first 12-24 hours are spent figuring it out, by which time it may soon be time to change.

Amost all the adjustments we do are with bolus or food, although I do experiment occasionally with temp basals when everything else is stable.


#15

That’s what we do—except when experimenting.

depending upon his exerfcise regimen of the past 3-5 days, his basal may be different. When he has not exercised for a wek (for instance when he is normal again after a week of sickness) he is at +25% or +30%. When he is in full, intensive exercise mode (2 hours+ per day sustained over a full week or more) he is at -25 to -30%. He can be anywhere in between.

We have started doing that, but not enough. It is hard in our neck of the woods to do inside exercise with the right level of intensity. Inside the house we only have the stationary bike that provides a high level of aerobic exercise, but cannot match swimming, and where his response to exercise is radically different. It is already cold/ wet enough around here that it is difficult to exercise outside, soon to be impossible most days


#16

I am seeing significant “weekend” issues vs “weekday” issues. I am going to try and add late morning activity on the weekend to see if this can either correct the issue or minimize the issue.
This might be easier said then done however…


#17

This is easy to deal with when using a pump. I imagine he is getting up at the same general time every morning for school M-F. Just program it in.


#18

I am not an exerciser by nature, and have learned a lot here on FUD about various exercises and it’s impact on blood glucose. I am wondering though, if you could include some indoor aerobic/anaerobic “circuit” that would mimic swimming somewhat?

Maybe like this (I literally spent five minutes reading the Internet about swimming, for the first time in my life, so if this isn’t spot on - forgive me):

https://bengreenfieldfitness.com/article/fitness-articles/workouts-exercise-articles/dry-land-strength-training-swim-workout-requires-pool/


#19

Could be, but it would only take a few hours to prove one way or the other. This is very prevalent phenomenon I see with pumpers, people don’t want to try anything else because they psychologically feel like they couldnt go back to the pump… but that’s just simply not the case. If you try experiments with Lantus or tresiba you still have the option of going back to the pump at any moment… it will be there sitting in your drawer.

I know you’re smart enough to connect those dots

This is chaos.


#20

[EDIT] He is but unfortunately he is not getting that problem every day:( It happens about 50% of the days only. I have not been able to figure out what other circumstances correlate with it.