I agree. We have so many formulas we can use to dose insulin but when we look at all the variables that are not consistent, act differently at different times of day, I sometimes wonder whether worrying about the precise insulin to carb ratio, sensitivity factor, and duration of insulin action really matters.
I’ve found, however, that within all that effort to precisely control, there exists an ability to simply add or subtract insulin - either step on the gas or put on the brakes. So I see the imperfection of all our effort to quantify and distill everything to a magic formula. But doing so, I believe, puts us within reach to make micro-boluses and carb nudges to move us more sideways than up and down.
You are correct that basal (note spelling) is essential. Insulin is required at all times just to keep the “metabolic economy” running. This is referred to as basal (as opposed to bolus, which is taken solely to promote the uptake of carbohydrates from food). Insulin pumps use only rapid acting insulin (Humalog, Novorapid or Apidra) and deliver basal insulin by running constantly at low rates. These rates are programmable (typically in 48 half-hour time slots throughout the day and night. The rate steps are tiny (as low as 0.025 units/hour) and adjustable in steps of 0.025 units. This is a KEY advantage of pumping (some would say THE most important advantage) over MDI using long-acting insulin. Although getting the basal patterns properly adjusted can be a bit tricky and time consuming to get correct (it’s a lot easier if you use a CGM), it allows exquisite control of basal rates so as to match the body’s requirements*. The ability to control basal in such small steps is a particular advantage with a small child whose requirements will be small. In addition bolus rates can be adjusted “on the fly” up or down to deal with for example exercise/activity or illness which can have a dramatic effect on basal requirements. For example running a temporary reduced basal can cut dramatically the need to keep loading in carbohydrates when exercising (or when a child is running around)
Many people would consider that this is much more important than the ability to bolus which is much more a matter of convenience**. I strongly recommend that you acquaint yourselves with the theory of pumping. You may want to read
Pumping Insulin by John Walsh (available from Amazon)
Good luck
Joel
*As an example of basal patterns, I have 7 different rates programmed that range from 1.700 units/hour to 0.300 units per hour. If I were taking the same amount of Lantus it would be spread evenly over 24 hours so a lot of the time there would be either too much or too little basal around.
** Of course a pump allows you to bolus in steps of 0.1 units AND corrections are a lot easier since the pump will estimate insulin remaining active from the last bolus and suggest a correction dose.
It IS tough. So much is tough with a toddler, and the big D just makes it more so. I’ve heard others say it gets easier, and it DOES somehow, but I’m not sure if it’s because management gets more predictable, but rather that you sort of learn to “roll with the punches” and adapt more quickly, you learn to stress less about the highs and lows and it takes up less of your brain to do the basic care stuff. In the end, we just do the best we can for our kids, pray they don’t get complications, and take heart knowing you’re doing all you can.
The one other thing I would suggest is to get used to thinking and adjusting on your feet…you’ll never nail down the “perfect” basal or bolus regimen because our little one’s bodies are so variable, it’s better to figure out how to quickly adapt to the rapidly changing situation. For instance, my kid is sick once every two or three weeks for 4-7 days, and that dramatically increases his basal needs. At first we were waiting two or three days to adjust basal to “be sure” it was a real pattern. Now I adjust his dose up or down in the moment more often. Running high? IS he sick? Who knows…doesn’t matter. If he’s high, he needs more insulin.
Now I never just sit there with a number that’s rising out of his range; I at least check if the pump recommends extra and very often will override the recommendations if it’s clear to me he’s rising fast or if I’ve seen a certain pattern with a food before. In that instance, I assume the pump or the formulas just don’t know something about what his body needs right then, and the proof is in the rapid rise. Now instead of changing his basal after 3 days we do so if he’s running high for 6 to 12 hours – if he goes low more than once in 24 hours or for two meals in a row, we shift down basal or back off the carbFs or ISFs. And in the moment I look at the trend in the numbers (why CGM Is so helpful) and will make adjustments on the fly based on some back-of-the-envelope predictions of where he’ll end up based on carbs eaten, plus some gut intuition. We even have an open-source artificial pancreas algorithm running and STILL need to make these dynamic corrections.
I think what might help with this mindset is the book “Sugar Surfing” by Stephen Ponder. The strategy is basically responding in the moment to blood sugars, and even if you don’t do it all the time, some of the tricks, like “waiting for the bend” and “nudging” highs down are really really useful and I think can be used by almost anyone.
Good luck and keep up the good fight! You’re doing a good job with your little one.
I feel slightly more empowered and liberated now! For the first time ever…last night…I woke up and looked at our sons receiver and it was sitting pretty 120 at midnight, then it started to rise at about 3AM…upwards toward 300. I checked his sugars (fortunately he stays asleep during these), and it was indeed 319…a fast “up” turn from AWESOME…to DAMN, WHY’S IT DOING THAT, kind of High.
After checking and verifying his sugars, and knowing he had no fast-acting IOB, I pulled out the Humolog pen and gave him 1/2 dose. About 20 minutes later, he’s sitting pretty again at 100 - 120. It felt GREAT to take it into my own hands and not just sit idly by …sometimes an entire night…without doing anything because I was afraid of “breaking the rules”.
I’ve finally figured out that my child’s health is MINE and MY WIFES responsibility, and at the end of the day, our son and us have to live with each other and the consequences of any decisions that we make (or don’t make)…so I did it. And it felt AMAZING to watch those BG levels drop back to the range we are COMFORTABLE with…
Never again will I just sleep through the night when his sugars are over 200. And I’m looking forward to getting him on the pump so we can have even finer control by being able to administer smaller doses.
So thankful for everyone in this community that have enabled my wife and I to kind of “break free” of the chains that bound us since we found out our son had T1…“following all the rules” all the time isn’t good…and there is no cookie-cutter approach to living with this disease…as everyone has expressed, it’s ever changing, and we have to adapt to the ever changing body, environment, health of our own bodies, and those of our kids.
Again, in the longer turn you need to learn some of the reasons why this happens. With no IOB (and presumably hours after the last carbs), this has to be a basal issue. Either your Lantus dose needs increasing (perhaps unlikely if he was at a good level earlier) or more likely he needs more basal as the time approaches dawn. This is a really common phenomenon which is easily sortable using a pump to provide basal. Another reason to push for one!
I’m glad to hear that you are feeling more empowered. Just one question:
Does it really only take 20 minutes to go from 319 to 100-120? I might be nervous for the remaining time the insulin is working.
One thing I was told about a correction bolus before bed is to cut it in half. It is much harder to monitor the drop when you are unconscious. I know from experience that you are probably getting little to no sleep and the last thing you want to do is doze out–when intending to be awake.
After 11 pm? Carbs should have cleared the system after 3-4 hours. You said no IOB which suggests 4-5 hours at least from bolus. If so, you under-bolused, if earlier, it’s most likely basal.
He feeds all night off and on. Erin (my wife) wants to ween him (again), but it’s really comforting to him so I’ve said…why not just continue and if it causes elevation I’ll just give a correction.
