Hello everyone. Our son is a newly (Feb) diagnosed Type 1. We’re doing a low carb diet and over the last week we’ve been chasing lows as we seem to be plummeting into a deep honeymoon. We’re down to a TDD of about 2 units for a 30 kg 8 year old. We’ve been giving that primarily as lantus because we’ve been too consistently low to want to bolus at meals, and we’ve been changing too much everyday to really have a handle on what our current IC ratio is.
I was wondering if any other Type 1s or parents got down to very low doses while in a honeymoon, and how they handled the dose (we use pens, not a pump). My gut feeling is that injecting bolus at some meals would more accurately mimic physiologic function and support the pancreas, whereas if our dose is so low, the pancreas can probably handle basal on it’s own. But I can’t really find anything to back this up. Obviously, just injecting the lantus is easier, although we do split our dose.
If you are chasing lows with Lantus only, I would take a look at doing some basal testing when asking a meal. Do one meal every couple of days. Once you can get your child stable on the Lantus dose, then you can more accurately look at the bolus.
As far as the effect on the pancreas goes, I believe there’s some evidence that early diagnosis and getting on insulin sooner rather than later helps lighten the load on stressed islet cells and can help extend them, maybe in some cases preserve some endogenous insulin production long-term. That’s a really good thing–acts as a bulwark against DKA, among other things. So I’d be inclined not to rely on the pancreas handling the basal on its own: the less work it has to do, the better.
Still leaves you with a problem. I’m not a parent, but I know that dosing small children with pens is a chronic issue because you’re stuck using integer-sized increments when fractional doses are actually what’s needed. From Googling around it looks like there still isn’t a basal insulin available in less than U-100 strength (I’d be happy to be proved wrong, if someone more experienced with pedo diabetes knows better). But you might be able to approximate smaller increments using using a small-dose syringe.
At 2 TDD for an 8-year old (according to common weight charts appears to be well within the normal weight range for age), I would wonder what the BG numbers would look like 3~4 hours after eating as well as first thing in the morning with no insulin?
Not to discount from what @DrBB said, just wondering if a dose this low is really doing much of anything anyway or if it is potentially more trouble than it is worth particularly if it is suspected as the cause for ongoing lows?
@Margaret_Mckernan
Have you checked with your Pediatric Endocrinologist? What was their suggestion?
Does Sanofi sell or provide diluting liquid for Lantus? If so it would make you able to alter the U/100 insulin down to whatever works for your son. I know that Eli Lily and Novo Nordisk have diluting liquid for their fast acting insulins.
Since you are going low carb have you read Dr. Bernstein’s book Diabetes Solution? I haven’t read it but I believe it has very specific information on dosing for children while eating low carb.
I thought about diluting as well but then you’d need to use a syringe and vial instead of a pen. If your child wakes up in a normal BG range, perhaps just dosing for meals would give you good enough coverage. It would be nice to use a pen that delivers in half unit increments, but I’m not sure if there is such a thing.
This would be good info to post with your question and would help the doctor as well.
Do not dilute or mix Lantus® with any other insulin or solution. If mixed or diluted, the solution may become cloudy, and the onset of action/time to peak effect may be altered in an unpredictable manner. Dosing Lantus® (insulin glargine injection) 100 Units/mL
This, from 2015, may also be of interest:
Challenges in Delivering Smaller Doses of Insulin
There’s also this, from 2006, quoting Dr Bernstein bemoaning the non-availability of Lente and Ultralente though it doesn’t give a citation:
“But you can’t dilute your basal doses anymore,” he says, “unless you go back to NPH and give it—instead of twice a day—three times a day. The smaller the dose, the less peaking you get…but it means more shots and is more of a nuisance for patients and parents.” https://www.diabeteshealth.com/how-will-we-dilute-insulin/
Thanks everyone, for all of your helpful thoughts and suggestions. Our peds endo is pretty conservative, overall ok with us doing lower carb but would have us increase carbs to meet insulin doses, which is a bit backwards to us. We’ve been on the low side for our morning fasting sugars over the past week (around 69-75). We do four meals a day because we had to convert a grazer to a meal eater, so we test before each of those meals and that’s typically in the 80s (66-100 range). Our highest 2 hour postprandial has been in the 130s.
I think since we’ve been chasing lows so much, we don’t have a great sense right now of where we are. We decided to not give any insulin today if our pre-meal readings stay below 130, and the try to go back to a divided lantus dose, 1 unit each 12 hours. if we get lows with that, we’ll cut to 1 unit lantus and bolus 1-2 meals. If we start trending higher, we can stay with two units and bolus 1-2 meals. My husband wants to look into syringes for half doses, but my son and I like the pens lol. I think with our meals containing more protein and fat, we probably have a lower and more sustained postprandial rise that doesn’t necessarily sync with the Novalog action anyway, and for now we’re getting ok coverage with the lantus. We have read Dr Bernstein’s book, and I know he favors regular and nph in some instances, but our endo not so much We live in Hawaii and my son doesn’t wear a lot most of the time, so not ready for a pump yet lol.
@Margaret_Mckernan
If it was me, I would really want to know what the BG numbers would look like with no insulin.
Chasing lows is no fun for anybody. Not you. Not your child. Maybe the honeymoon is right now delivering enough (pancreas) insulin for your child?
BTW - The comment on the pump. I strongly agree with you. This does not sound like a pump would be in any way beneficial. At this point in time.
But at the end of the day, the choice of what to do rests with what you as Parents deciding what is in the best interest of your child in conjunction with the medical advice you receive from your Pediatric Endocrinologist.
Adapting your life to fit your treatment, rather than the other way around. It was the only way to do it for a very long time, because the old insulins and technologies (or lack thereof) just couldn’t do anything else. I lived with it for 20 years, but those days are long gone, or should be.
ETA: I agree with @Tim35: it would be useful to have the #'s without insulin. There’s a lot of discussion and debate, too, about low carb and pedo Type 1. I adhere to the general rule that the less insulin you take, the easier it is to deal with, and that can be a pretty huge consideration especially at the start. But kids present a different set of challenges, and a lot of parents argue pretty vehemently that developing bodies need more carbs. I don’t have a dog in that fight, but it’s worth seeking out discussions about it.
–Good for you; educating yourself is crucial in handling this disease–
I was on the stuff for 20 years and the mere thought of it makes me shudder. So yeah. I think even Bernstein regards it as a difficult and inadequate solution to the problem you’re dealing with.
Hi - we’re only 6 months in here, so take the following with a pinch of salt.
Honeymoon for my 4yo was more a case of sputtering pancreas than resurrected pancreas. Like a switch which needed some contact cleaner.
There were successive days were we did not bolus at all. We consistently kept two basal doses going 12 hours apart adjusting by 0.5 - 1u at a time based on the relevant daily sputter, which the endo thought was a sound insurance plan against ketones (Go Forth And Experiment seems to be her motto to us). His combined daily basal dose for that period would be anything from 1u - 5u. YCDMV.
The half unit pen we use is Lilly’s HumaPen Luxura HD. We keep a bunch of them around and use them for all his insulins.
I like your child’s endo’s take on diabetes. Experimentation, within reason, is the best source of knowledge of anyone’s unique glucose metabolism. Doctrinaire fixed formulas can lead us to believe that we’re simply reaching for the magic formula. Diabetes is a moving target. If you fail to observe and respond appropriately, it will leave you rudely behind.
While there are no guarantees with diabetes, your devotion to the details of your child’s diabetes will help minimize his risk of long-term health complications. You are on a good path.
Thanks for sharing your experience! We went all the way down to zero for a few days and then the sugars started trending back up. We’ve kind of settled for now at 2 units of lantus in the morning and 2 units in the evening 12 hours later. When we start seeing lows again, we cut back to 2 units in the morning and 1 at night for a few days. We tried doing 1 and 1, and adding novalog to some meals, but right now with our relatively low needs and low carb meals, novalog is causing some pretty big swings.
Of course Lantus isn’t the only option for a long-acting basal insulin. For example, Tresiba, which a lot of adults have much better experience with. I don’t know what the constraints are with those alternatives in the pedo-T1 world but it might be worth looking at.
As an adult who eats low carb and uses small
amounts of insulin, having the half-unit Luxura pen was really helpful! Ultimately I switched to the pump (after 38 years of shots) and am happy with the micro-dosing that’s possible for better control. But since you and your son prefer pens, it will really help to have that half unit option once he’s needing some short acting (Humog).
I’m not sure where you got your pens from, but there are plenty of half unit ones available… Just perhaps not at your hospital or pharmacy. Even Sanofi makes a junior version with half units. You may just need to buy online, contact the manufacturer, or ask your pharmacy.
We live in Hawaii and my son doesn’t wear a lot most of the time, so not ready for a pump yet lol.