So my son was diagnoses with Type I right at his 8th birthday around 1.5 years ago. He currently uses a dexcom g6 and the omnipod dash (although we just go approved for the omnipod 5 so may be switching to that soon) Despite our best efforts I feel like his sugars are still all over the place. His A1c is not terrible usually just above 7 (obviously would love it lower but its not horrible) but the day to day management seems difficult. I posted here about a year ago when we were having trouble with the omnipod failing on day 3 and this community was helpful in helping us figure out that the problem was the insulin (humalog) and after fighting with insurance we were able to get on Novolog and that has helped some. However I feel like many days we are on a roller coaster so I thought I would see if anyone could give a suggestion of where to start. Even though the average sugars may be fine multiple days a week we deal with sugars in the 350s that don’t want to come down and can have multiple lows a day. We’ve tried having all the same foods for a couple of days to reduce variable but even then things seem unpredictable. I know diabetes can be hard to manage, but this doesn’t seem normal. His endocrinologist just says “that’s just diabetes” and never makes any other suggestions other than things like let us change this segment of the basal by 0.1 and see you in 3 months. Obviously my husband and I try to watch close for patterns and make adjustments on our own, but things are so inconsistent it seems hard to find patterns. Every 3 days when we change his omnipod its always a roll of the dice whether it’ll be a “good pod” or a “bad pod” and the difference between these 2 can mean he requires twice as much insulin with one than the other. My son is currently homeschooled so we can give him small dose of insulin to try and get him controlled or can give him small amounts of sugar to try and bring him out of lows gently but even with all of that it still seems hard to get him controlled. I cannot imagine what it would be like if he were at school he would be out of the classroom dealing with sugars pretty much every day. So I guess my question is how do I know if this is really just normal versus we need to try something different. I just feel so overwhelmed and like I’m letting him down but do not even know where to start.
@Oshii Some ideas for you to consider:
[Your son is 9.5 yrs old, possibly having early puberty starting and that can throw things off considerably. Is that possible?
He’s on Omnipod, but you don’t say which (Eros, Dash?) w/ possibility of O5. From the reading I’ve done on O5’s (not experience!): if he’s swinging wildly without insulin/sugars then O5 will probably not help much because it reportedly bases its calculations only on total daily insulin for dose calculating and adjusts amounts over time; large swings daily are somewhat problematic or require manual boluses to correct. I recommend you discuss with an Omnipod 5 knowledgeable person; you may benefit from watching a LoopnLearn videos comparing Loop and O5 (Loop vs. Omnipod 5 Panel Discussion - YouTube and Loop and Learn: Loop vs. O5 Chat Questions Answered - YouTube) and direct messaging those mentioned in the videos.
What might help, whether its food related (I’m not accusing him, but he may be sneaking food you aren’t aware of…its happened to the best of parents!) or early puberty or “its diabetes,” is combining the Omnipods with a CGM and software to make an AID (Automated Insulin Device). This could take the form of Loop, FreeAPS, or other software (Note: the ones mentioned are non FDA approved, but have been in use by thousands of people world-wide.) Alternately, you could explore the possibility of Tandem’s pumps with IQ software or other brands.
Lastly, and whether you do any of the other, have you tested his current basal rates (they can be set for various hours of the day) for accuracy? How about his ICR (Insulin:Carb ratios used for bolusing and also change by time of day)? ISF (Insulin Sensitivity Factor) (also changeable by time of day)? CR (Correction Range)? Other’s depending on the device support? If not, or if using the one’s established initially by your Endo/Doc, they may need adjustment now, as puberty onset occurs, or as various life events happen. You can research these on your own, look elsewhere here on FUD for advice on them, look at various Loop and Learn videos on-line and elsewhere (use those that make sense to you or are recommended by sources you’ve evaluated and trust!)
I take an activist view: each of us has to be our own advocate (parents for their kid’s) and that means not relying solely on what a doc says that sees a person for 15 minutes 2-4 times a year. I respect you may not believe the same way, so eval the above comments and take action where you deem appropriate. Hopefully, this is helpful.
I’ve had 5 different Endos. I highly recommend shopping around for the right health care team. I found an Endo who himself has Type 1 Diabetes. I have had Endos in the past who were very lackadaisical about control, and if I had followed that advice I would have even worse control. With my new Endo, I’m leaving appointments informed, motivated and my A1C is improving. I also found my switch from Omnipod Dash to Tandem with Control IQ tech was a total game changer. The tube sucks, there’s no way around that, but the switch has been the biggest factor in my improved management.
My last piece of advice is one I give in hindsight: get him therapy. This is a terrible condition to handle mentally. I could have saved myself years of mental grief if my parents had insist I’d seen a therapist early on.
I’d say early on I had a tough time.
However, I began targeting the blood sugars of a non-diabetic and it seemed to make control easier as I wasn’t having to aggressively dose for high BG. In the event of a high BG, I dose aggressively provided there’s still enough time to flatten things out before bed.
As for lows, the Dexcom does a great job of notification. I’d claim it’s much easier to fix a low than a high and when the Dexcom indicates a quick drop it’s easy to take care of it ahead of time. In taking care of lows, I’m careful to not have too many carbs. 20-30g goes a long way.
Diet-wise, in general I pursue proteins and natural foods. However, there are times when the BG will require carbs or I’ll pre-dose for them. Packaged foods and high fructose corn syrup can wreak havoc on BG.
My insulin to carb ratios have varied quite a bit, but by being familiar with certain foods it’s been easier to know the insulin requirements.
I’m sure some people might disagree, but this has worked well for me.
Have you also considered a faster acting insulin?
Fiasp and Lyumjev are both much faster acting, and spend less time time active in your system. This typically makes for a much easier time to manage T1.
I know my A1c dropped with an increased quality of life when I switched over to these faster acting insulins.
I agree with TomH that it would be prudent to check the settings.
In particular, start with the basal. Try skipping or delaying each meal by a couple hours to see what happens when there’s no food and meal bolus. Does the BG drift downwards for no reason? That suggests too much basal. Does the BG rise instead? Then he needs more basal. And look at the graphs overnight to see if there’s a tendency for the BG to rise or fall.
Once the basal is right, consider what happens after meals. If the BG is usually too high 2 hours later, maybe he needed a larger meal bolus, so change the insulin:carb ratio to make that happen. And of course if the BG is usually falling too low 2 or 3 hours after the meal bolus, the bolus was too large so change the insulin:carb ratio to give smaller boluses.
If the BG is rising over 200 mg/dL I will probably start giving corrections with a syringe (or use an insulin pen) rather than through the pod, in case that is the cause of the trouble. I don’t let my BG get to 300; I’m taking extra-large corrections long before that point, with the understanding that some time later I may need to eat some of the glucose tablets that I always have in a tube in my pocket. I have my CGM low alert set to 85 so I get the warning long before I’m actually low, so there’s plenty of time to take the glucose and avoid the hypo.
And recall that the Omnipod tends to lose some of the insulin when a bolus over 5u is given: some leaks out past the cannula rather than making it into the subcutaneous tissue to be absorbed. So if a meal needs a 15u bolus, better give 5u every 5 minutes rather than 15u all at once. Or use an extended bolus to spread the bolus over time.
We are on the Omnipod dash right now. No concerns with extra food consumption. We have been regularly trying to adjust the basal and feel like maybe the daytime basal is right but the nighttime basal has been a huge struggle. His nighttime needs seem so much high than daytime and I’m not sure if that is normal or not? He seems to go very high at the beginning of the night no matter what we have changed (increase I:C for dinner or snack) other than making his basal very high for the first 3 hours of the night but then he usually goes low 3 hours after that. If we try to give more insulin with dinner or snack he just goes low and we will have to give a small amount of sugar (2-4 carbs) or with no intervention will U turn and go to 300. We try really hard not to overtreat lows as 4 carbs is often enough to bring him out and will just redose with another 4 carbs if needed. Corrections of highs seem to be really hard to target as usually if following correcting based on insulin on board he will not need any more insulin until he is close to 3 hours out from a meal and then the insulin will still be somewhat active when he has his next meal and then he will go low. The other big issue I mention is that some pods seem great and our numbers seem reasonable but then the next pod he may repeatedly crash low or go high and we have to give multiple corrections and there doesn’t seem to be a reason why. It is not a certain site or anything else we can tell but does seem to be related to the pod because that particularly pattern will just be for the duration of that pod. We thought about trying T slim but we have to commit for 4 years with our insurance and with kids so much can change in 4 years and its hard to have tubing for an active boy.
Each body is different. The body gets to decide how much insulin it needs, we simply have to discover that amount. And it changes from day to day and from season to season. I’m an old man, and these days my basal at midnight is set to 1.05u/h, then dropping a little to 1.0u/h at 2am, then dropping significantly to 0.3u/h at 11am. Last autumn I didn’t need as much overnight. My strategy is to make a really small increase in the basal (like 0.05u/h) about 2 hours before the nightly rise, and if that starts to help over the next couple days, then make another really small increase, and continue gradually finding what tends to keep a good overnight BG.
That sounds like “very high for the first 3 hours of the night” was too much basal. Maybe try “just a little bit higher” starting 2 hours earlier than that. The goal is to anticipate and prevent the BG rise, not to use basal to give a big correction after the rise is underway, because as you saw, that is too much insulin and it causes a low a few hours later. If your son goes to bed with a reasonably good and level BG, a good basal should tend to keep the BG level.
Sometimes it helps to use a smaller bolus given a bit earlier (maybe 10 or 20 minutes) before eating instead of a larger bolus right at meal time. This is called pre-bolusing.
Too many moving parts to understand this situation. Try a simpler experiment to understand. Some time when he has relatively level BG and it has been more than 4 hours since the last insulin dose, give 2g sugar. Does that send his BG to 300? If so, then maybe correcting a low BG for him only needs 1/4 of a glucose tablet, or less. But if 2g sugar doesn’t send his BG to 300 this time, maybe something else was happening at that meal time.
It sounds like you have learned how to correct lows easily and with no fuss.
Dosing insulin can be a more difficult skill because a good basal is fundamental, and then dosing for food has the complexities of how many carbs, how fast are those carbs, is he recovering from exercise, and so on. So it takes some experience to figure it out. But keep in mind this is not like archery, where we aim the arrow as perfectly as possible, and then we shoot the arrow and 2 hours later we look to see if we hit the center of the target (good BG). Managing BG is like driving a car, where we are frequently glancing at the speedometer so we know whether to press a little harder on the accelerator pedal, or lift off a little to get the speed back to a good number. Similar with dosing insulin. I calculate a meal bolus, but I’m looking at the BG pretty often to see whether it is following a good path or is it starting to go too high or too low. I give frequent small adjustments with insulin or carb to steer the BG in a good direction.
I find that frequent small adjustments given early is much easier for me than large corrections after the BG is way out of range.
It’s not archery, it’s steering. If the BG is too high, he needed a bit more insulin a bit sooner, so give some now and watch what happens. If it wasn’t enough to solve the problem, give a bit more. After the BG starts to come down, if it’s falling too fast, give some fast carbs to use up the extra insulin before the BG goes low. If another meal is coming, reduce that meal bolus to account for any remaining IOB at the start of the meal.
“and there doesn’t seem to be a reason why”
I remember that experience. When I was a beginner I thought insulin dosing was like archery. If I just understood and carefully calculated all the variables, I could give the perfect dose of insulin that would work right. And if it didn’t work right, that means I missed a factor or something is wrong with the equipment or medicine or my analysis.
But now I think that is a bad model, because there are so many variable factors that influence how much insulin is needed each time. It could involve the particular insulin absorption properties of the body where today’s pod is inserted, but it also has to do with the amount of carbs, speed of carbs, whether I’ve been exercising, am I under stress or resisting some illness, what are my hormones doing at this moment, do I have any IOB or active carbs remaining from earlier, and so many other factors.
I have learned to figure a reasonable insulin dose, give it, and watch what happens. The initial dose is just a starting point, so the amount is not critical. If I see the CGM graph start to curl up a bit faster than I expected, maybe I’ll give a little more insulin. If it isn’t rising as much as I expected then perhaps I will need a little extra carb pretty soon. And so I’m frequently pushing the BG in a good direction whenever I think it is wandering off. If I push too hard and it looks like it is heading too far back in the other direction, I can solve that as easily. Insulin and fast carbs. Some people call this approach “sugar surfing.”
For me, the breakthrough came when I finally understood the words of my instructor. She said: “If your blood glucose is too high, you need more insulin.”
@Oshii If you’re already doing this, disregard, but one thing I’ve learned is to make changes slowly…i.e. make a change to only one thing, try it a couple of days to determine the affect, then change it further, or change another thing to see the effect. If you change multiple items at once, you wont know what had the desired effect or you may be making offsetting changes.
Also, I know my own needs are for a significant part of my bolus prior to a meal (60-75%) then apply the rest about 30-60 minutes afterward. There’s no comparison between myself and your son (I’m 68), but this is a relatively common need amongst T1s. Further, some meals and some bodies take longer to process the foods eaten (high fat meals in particular can delay the carb impacts and those with gastroparesis take longer as well). Lastly, what is the diet of your son, i.e. high fat/high protein? Some T1s swear by counting up to 25% of fat and 10% of protein as carbs and dosing for it for high fat/high protein meals. Is that possibly applicable?
@Oshii, I feel your pain. My son is very very carb sensitive. His dia friends would treat with 15 carbs and go from 60 to 100. My son would treat with 15 carbs and go from 50 to 300. We also noticed that for some of his friends control was super easy and for others like us it is much harder. Of course adding growing into the mix and it gets pretty frustrating. When my son wasn’t growing much we could keep his A1c in the mid 6’s with an occasional low 6. When he was growing it was all we could do to keep it in the mid 7s. In addition to the carb sensititivity issue I think there is likely differences in alpha cell function that explain how one person can find it easy to manage and another is all over the map. My son was very carb sensitive and was often on roller coaster rides. At least he doesn’t have any of the other diagnoses that cluster like thyroid and celiac. We have a dia friend who has both in addition to diabetes that is difficult to manage. uuugh. There is always a bright side.
I whole heartedly agree with @jo_jo here! Your son is not getting the attention he deserves, and you’re doing your best.
Getting an Endo that understands T1 vs T2 can be a challenge - as crazy as that sounds! If you live near a research hospital, or children’s hospital, you might have greater luck.
There are a few books that safely teach how to find basal rates, I:C ratios, ISF. Have you read any? Need recommendations?