The numbers aren't adding up. Anyone know why?

Type 1 and LADA Parents of Children with Type 1 Diabetes
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So I’m getting further into Think Like a Pancreas, and I’m currently on Chapter 6 - Basal Insulin Dosing. I read the tables for the top/bottom ranges of both Basal and Total Daily insulin requirements for each age range and decided to “run the numbers” to see how our son fits into the recommended dosing.

What I found is our son’s nowhere near where the “Young Child” range is (in fact, he’s only about 1/2 the recommended dosing for his age). So I’m thinking maybe he’s just too small to be considered a “Young Child” right now???..for purposes of the calculations in this book? See the two screenshots.

The first is the page showing the different ranges taken from Think Like a Pancreas, page 129…highlighted are the two that I feel most fit our son (Mostly inactive and Moderately active),

What he should be.jpg2988×5312 1000 KB

…and here is my Math…as you can see, using yesterdays numbers at the bottom of the page, he’s only using about 1/2 the recommended dosing. What gives?

Our numbers.jpg2988×5312 2.07 MB

We had an epiphany…a realization yesterday that we corrected, and, since then, we’ve had no spikes over 250. We had been noticing that EVERY SINGLE meal, even though we were doing everything we were directed…giving the right dosing for the given carbs, waiting the required time, etc., our son was still spiking over 250…IN FACT, he was spiking over 300 and nearing 350. So, against Doctor’s orders, I gave more insulin to bring down that number (because I can correct lows when he’s awake easy, before they become lows.) Even though the Endo’s don’t seem to care what his sugars do for 2 hours after the meal, I DO. So, I had been giving .5 more Bolus correction after the fact because I refused to watch his sugars rise (and stay) above 250.

So, in discussing (sometimes with raised voice) this with my wife, we came to the realization that something is wrong. Upon further consideration, we decided it could really be only one thing…he’s being prescribed too little insulin to cover the carbs he’s eating. So, we decided that, instead of following the doctors orders and giving him 1/2 unit for every 20 carbs, we were going to give him 1/2 unit for only 15 carbs and see how that goes…and guess what? It’s freaking worked! Since we made this change, there hasn’t been one spike over 250 and his sugars have mostly been around or under 200, which I am so thrilled about.

See the below CGM meter screenshots.

Here are the numbers for the past 24 hours:

Here are the peaks above 200:

…and here is the time he’s been under 200…this is a LARGE PERCENTAGE of the time…so this is definitely good for his A1C’s.

So, the main purpose of this thread was to get TuD’s input on why our numbers don’t line up with the numbers recommended in Think Like a Pancreas, but the secondary goal is to just let those NEWLY DIAGNOSED people, or parents of toddlers especially, know that it’s OK to make tweaks…

As I told my wife, the Doctor’s don’t give a crap if our son rides above 250 or 300 for hours at a time. And the Doctor’s also won’t have the loss associated with doing things wrong…as such, my wife and I finally are at the point where we won’t sit idly by and let the doctors dictate things that we know, through our own research, understanding and trial and error just aren’t right. That’s why we adjusted his carb to insulin ratio and it’s why we’re also going to tell the Doctor that their ratios are just wrong…the numbers speak for themselves in our opinion.

Thanks for reading this long post. Looking forward to understanding why our numbers vary so widely (only 1/2) of what the book recommends, for both Basal and Total Daily Insulin.

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Not without reason, doctors do tend to be more apprehensive about lows, much more so early on in the disease when you’re still learning, and much more so (I suspect) when it’s a toddler being treated. As you get more experienced and confident in what you’re doing you have the right to do what your judgment tells you is right, as long as you’re keeping records and doing it in a rational way (which clearly you are). Eventually you have to take more of it on, just as your son will eventually, because you are there 24/7 and the doctor is not. As we say, it’s YOUR diabetes–or in this case your son’s–not theirs, and you are the ones who have to live with it and manage it.

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You are moving in a promising direction to help your son for the long term, The sooner you take the reins from the doctor, the better. You’re clearly dedicated to learning all you can and experimentation within reasonable limits is the best way to continue to learn your son’s metabolism. This is such a key skill since the nature of diabetes is that it changes. If you fail to change with it, then diabetes wins.

Do the test, keep records, adjust. Repeat.

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That’s such great news about your son’s numbers. The CGM makes a dramatic difference in how “aggressive” you can be in treating highs. After 23.5 years of diabetes, for me, the CGM was literally life-changing. Once your son starts on the pump, you’ll have even more fine-tuned control. You don’t have to learn it all at once, but just take it one step at a time as you’ve been doing, and keep communicating with your son’s doctors.

In regards to your son’s insulin requirements, it could be that he is in the honeymoon phase. Lots here, who are diagnosed as adults, consider the honeymoon phase to be a period where little to no insulin is required and blood sugars are pretty stable. But it’s not like that in kids. For kids, the honeymoon phase may mean they need less insulin, but they definitely need insulin and blood sugars definitely still fluctuate a lot. In Type 1 Diabetes in Children, Adolescents, and Young Adults (I forget which page exactly) it says that people who require <0.5 units per kilogram of body weight are in the honeymoon phase. But, in reality, it depends on more than that, since eating a low carbohydrate diet or being extremely active could also result in using much less insulin. In the end, these are all just guidelines and starting points, and everyone is different. All that matters is that however much insulin your son takes is enough to keep his blood sugar in range.

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“Average” is just that. Always go by what you see in BG tests and CGM results.

For example, most Type 1s use MORE insulin when they’re asleep. I use less. I have actually had to even cut my basal levels at night. Some of that MAY be because I’m very active during the day and the effects happen later. But, I go by what my CGM says. It’s been very accurate

You are becoming more and more aware that your child is unique–and his Type 1 is no different. It sounds like you’re figuring that out–so, well done

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I’m so glad I found this topic. I want to bemoan my condition. My twin says that I must know what happens when I eat something that surely I’ve faced every possible situation many tins and know how I will respond to everything. I mean can it really be more complicated than taking insulin on time and eating the right way. How could I possibly think my blood sugar would be okay after a hamburger and milkshake is the sympathy I get when diabetes makes me ill. And being ill is hard. Now tonight I take nine unit bolus one hour before dance with blood sugar trending down at 150. I’m running late so I drink a lot of milk. Stomache hurts so I slow the dance to recover. Too much milk in there. At break I’m exhausted. I look at my phone and I’m 230. And I’m discouraged. What if I’d not drunk milk? What could I have known to do. I didn’t want to be low or high. It’s some comfort now to tell you that I know how to avoid lows and I know how to avoid highs but to avoid highs and lows I can’t. I wanted to check blood sugar while I was drinking milk but phone was in a bag and I was driving. I’d taken enough insulin for a meal I didn’t eat so I thought I was investing calories I needed. The disappointment I felt seeing the 230 reading and feeling the special weariness of high blood sugar and knowing how long it takes to correct. And the dance not waiting for me to fix my blood sugar and the sacrifices I’ve made to achieve good health. And the inability of others to deal with my problem after having tried every tack.

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First, congratulations on your son’s improved numbers. Mega congratulations. :+1:

Second, while Gary Scheiner’s book is one of the best anywhere, no set of guidelines fits everyone. Physiologies vary so widely that it’s really just a normal bell curve; you may fit in the middle, at either extreme end, or anywhere in between. Some people will fit the averages perfectly, others won’t even come close. Empirical data about the individual case is the only kind that really matters.

Third—and this really is the biggie—you’ve just learned the huge lesson that everyone dealing with diabetes learns sooner or later: a doctor’s advice can take you so only far and no further. No one understands your specific circumstances as well as you do. Ultimately you are the one who has to figure out what actually works and what doesn’t, and who must steer the proper course.

Good job!

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Two concepts at play here in your post. One’s good, ones bad.

Concept #1-- you can find in a book how much insulin to use-- bad concept. There are people of all ages shapes and sizes who have to use tremendously different doses of insulin. The authors attempt to define what someone’s correct doses should be by simple formula misses the mark by a long shot.

Concept #2-- using your experience to make informed decisions about how to adjust doses as necessary leads to remarkably better control. Solid gold concept. This is pretty much the entire name of the game with diabetes management. You’ll be doing this every day until your child takes over, and they’ll be doing it every day for the rest of their life or until someday a cure exists. Keep it up.

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congratulations on the great numbers for your son! you are doing such a wonderful job, give yourself a pat on the back! having the cgm must be such a helpful tool with a toddler!
a newly diagnosed LADA was just commenting on the same thing about those dosing tables in Think Like a Pancreas. she (or he) and i, like your son, were not on that table, we just didnt come in on the average dosing because we are/were honeymooning.
there are so many things that the docs and DEs will give us advice for based on averages-basal/bolus split, number of grams of carbs to eat per day/to correct a low, correction factors, and they are good starting points at the very beginning. youre not at the very beginning anymore i guess, and youre on the road to taking complete control, something very empowering, if not scary!
good luck with further tweaking! xxx

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Your son is probably honeymooning, meaning he may use less than 0.5 units of insulin per kg per day. The other issue is that the guidelines for kids may not be ideal anyways. One study I found for younger children found that the traditional guidelines (like the 500 rule etc) don’t actually line up very well with what kids with good control (a.k.a. lower A1Cs) actually did. Kids with good A1Cs tended to have more aggressive carb correction ratios, weaker correction ratios, and faster DIA than you’d expect for adults… The guy who did the study literally wrote the book on kids and diabetes.
Here’s a link to the abstract.

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Congratulations on the improved numbers. Everyone is so individual that no formula is going to fit everyone. It may be a place to start, a good guestimate, or not. Also, if your son is fairly new to diabetes, he may still be in the honeymoon phase where his pancreas is still producing small amounts of insulin at times so he doesn’t need as much as he may need later on. You will find that it is a constant balancing act and he will need many adjustments as growth, appetite, activity, schedules, etc. change. Keep up the vigilance. It does pay off in the long run.

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I think I’m just addressing your first question - at least I hope I am - and you may have already received a satisfactory answer - I haven’t read through all the responses.

I LOVE “Think Like a Pancreas.” It’s one of my favorite diabetes books, but it’s been a while since I’ve read it. Do I understand correctly that the basal insulins listed there are hourly? Just as a point of reference, my son was using less than 2 units of insulin a day at the age of four just prior to beginning pumping. That included bolus and basal insulin. About half of that was basal, so he was using about .05 per hour.

Everyone is different and wee ones are WAY different. I think Gary is providing more general guidance in this chart.

When Caleb starting pumping, his TDD increased. He was up to about 3 or 4 units. But his basal needs were zero for periods of time - like early morning hours in the middle of the night. I would manually shut his insulin delivery off in the middle of the night.

You are getting a lot of great information, which will be useful to match up with all your testing and personal experience to come up with your own tailored approach.

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Our son (2 years old atm) is currently on 2 units of Lantus in the morning, then .5 for each 15 carbs he eats at meals. So if he has a big meal (30 grams), he’ll get a full unit. The Total Daily Dose (Basal + Bolus) is right now between 3.5 and 5.0 just depending on how hungry he is during a given day. Even with this amount, he still runs high sometimes…like now. He had breakfast of 30.5 grams (1 low fat yogurt (12 grams) + 5 chicken nuggets (the frozen kind, 12.5 grams) + 1/2 cup of milk (6 grams). I tried the GI model for this meal, but again, because he’s sick I think it’s severely skewing the results. Because, the average GI for these 3 meals together came out to 42.3, and because his pre-meal BG was “within” range (108), I decided to wait 10 minutes AFTER eating to bolus (1/2 way between the books recommendation of 5 - 15 min) his 1 unit of Humolog. His meal started at 11:40 and ended at 12:10. I gave his bolus at 12:20 and now, here we are nearly 1400 and his BG is 381. :frowning: I have given him ANOTHER .5 units of Humolog because it’s stabbing me in the heart to see his BG go this high. At one point he was at 397…now it seems to be going down.

Diabetes is so frustrating…all we can do is keep trying to figure out ways to make it better. At least I now know that this “combination” isn’t correct…at least while he’s sick…

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For myself, anything that is breaded and fried raised my blood sugar much more than the number of carbs would suggest. Fried fish, onion rings, poppers, anything like that. I’ve not heard from other people that this is a problem, but you might reconsider his chicken nuggets.

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Well, it’s one of the few things he wants to eat…so alternatively, maybe raise the insulin to cover the extra “BG rise” may be in order.

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Breaded and fried foods combines quick acting carbs, the breading, with fat. You may want to experiment with extended dosing for his chicken nuggets.

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Once we’re on the pump (next Thursday his first one gets installed), we’ll be doing extended boluses. Right now, I want to avoid giving him multiple shots since he hates them generally…but I end up giving him correction shots anyway, so it may be worth it to try it now anyway…maybe .5 a few minutes before meal and .5 an hour later.

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But…if he’s only eating 15 carbs, no way to do extended since the Pen’s lowest dose is .5. :frowning:

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I think the pump will perform nicely with your son’s aversion to shots.

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It is. It doesn’t play fair. Once you think you have it figured out, the rules seem to change. Illness plays into it, as does growth. That’s perhaps one of the most frustrating things, because you don’t realize a growth spurt is happening until it’s over and you see the pants are now too short. :slight_smile:

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