Help... My 15 yr old T1D, dx 9 weeks ago, had only 1-2 lows total for the first 7 weeks, then has had at least one low per day for the last week and a half.
Usually they occur when he is about 4 hours from his last meal and decided not to snack. Turns out that for the first 7 weeks, he was so famished from rebuilding his body from DKA, that he'd been sneaking "less than 15 carbs so I don't have to bolus" tidbits here and there, but now he's not hungry so he's stopped sneaking snacks.
Is having a low if he skips a snack normal? Does he absolutely need carbs every 3 hours? Or is his Lantus too high? My "impression" of basal insulin is that it should keep him in the OK zone 24/7, if he were to have NO carbs at all, hypothetically, and that his bolus should completely cover his carbs, so theoretically if he had no carbs at all, the Lantus should keep him between 70 and 150. But his pediatrician said he actually wants to raise his Lantus because of his dawn phenomenon readings, usually over 180. He doesn't seem to be going low overnight, we check him at 2am every other day and it's usually over 150 at that point. Why would he only go low during the day?
He's afraid to exercise for fear of going low, now.
What am I missing here? Waiting on word from the endo, but it could be a few days, as he's not local.... long long story, we live in a remote location...
how are you defining lows? I've had days where I'll run in the 70s all day, run myself up to 120 to go exercise and then hang out there too. I have a CGM and a pump which can make this a bit less risky but possible. It's probably not a realistic target as you are breaking it in but some docs will freak out a bit at 70. When my BG was less tightly controlled a few years ago, I'd feel more "buzzed" in the 70s, so maybe I'm a bit less aware but I can still feel them coming. I probably have 2-3 lows/ day. Perhaps I sort of engineer them in the evening to facilitate beer/ junkfood/ etc. but that may not be a good strategy either.
One thing that may be of use to look at would be the ratios and basal rates? W/ the additional data from the pump and particularly the CGM, I've noticed that even a small change in basal from say .85U/ hour to .90U/ hour will cause my BG to go down and run 20-30 points lower. That's sort of a challenge to adjust doses w/ shots but it would be like 1.2 less units/ day or basal? When I was taking shots, I was always going "in between the lines" to get extra or less I felt I might need, it was always sort of guesstimating but the extra data suggests to me that a little bit can go a long way. I he's in the 70s, or even 60s, a small adjustment might be all it would take to feel better, more powerful and be able to exercise or go cruise around on his bike or whatever? [disclaimer, I have had two serious bike crashes and several other ones. I chopped my ear off in one and a couple of teeth in the other one...on the teeth one, I availed myself of the opportunity to test the blood pouring out of my lip and it was consistent w/ the fingerstick...]. The other thing that might be figuring in is that if the bolus ratio is a little heavy, you can keep dropping after it burns out your food. If you adjust that, sometimes just 1G/U the other way, it can also make a difference. It's *very* important to keep an eye on stuff to know whether changes work or not but those are the two things I'd work on looking at? The books "Think Like a Pancreas" and "Using Insulin" have good guidelines too.
One final thing I'd add is that if you treat "hypos" with 15G of carbs, it can make your BG fly up, particularly if you are at 70 w/o a lot of insulin on board. I have been using 5-10G for a while now and, while it may take a bit longer, I don't see spikes that can end up wasting hours fixing. This is another thing that has some risk involved that you won't take enough but is something to consider. I *highly* recommend Starburst Jelly beans, not quite 1G of carb so you can get smaller, more appropriate "dosing" for corrections.
The problem is that people react differently to basal insulins. Some will say to Lantus: it covers 24 hours and the action pattern is even, for others the coverage is also ok but the action pattern is causing lows in the first 8 hours, then there is the fraction were even the coverage does not work as expected. The basal is expected to keep you steady for 24 hours and if it does not you have options:
a) you have the option to split the one shot of Lantus into two shots every 12 hours. The positive effect is that it is not that much insulin at once. The lower the dosage the better the Lantus will connect to the fatty tissue. This connection is important to slow the reaction of the insulin down. If somehow the Lantus manages to slip into the blood stream the reaction can be much quicker. So the splitting can reduce the risk for lows. At the same time very likely 24 hours will be covered more evenly with basal insulin.
b) if splitting does not work you have the option to switch to Levemir. This insulin injected every 12 hours has a more even reaction pattern because it binds to our blood. So even if the insulin by mistake will slip into the blood stream this will not increase the reaction pattern. It is worth a try and most endos should have a vial available for testing the individual reaction.
The biggest mistake is to just believe what the manufacturers claim: Lantus may be good for 24 hours but this does not help the individual were the coverage only last for 22 to 23 hours. It can react evenly but we see people with very sharp drops some hours after the injection (often in the middle of the night). Levemir can be good for 24 hours but most likely the reaction will not be as even as the reaction of the Lantus. So you might experience a more even coverage with two shots per day. These are all things worth to explore because they have a big impact on our quality of life.
It is a possibility that the problem is in the basal rates, but since Dx was 9 weeks ago, he is likely in the peak of the honeymoon period and making a lot of his own insulin. This is a good thing, but can cause some difficulties too, as insulin needs are changing very significantly and it is often easy to give too much insulin. I noticed this issue around that time too myself, what happends is he eats his meal and takes his rapid insulin, the food usually takes 2 or 3 hours to digest, durring this time digestion is realeasing glucose into the blood, which is being used up by a combination of the injected insulin and his own insulin. His pancreas still has the ability to push more insulin into the body as a result of elevated BG. So while the digestion process is releasing sugar into his body, everything is good, but after the digestion stops around the 2 or 3 hour mark, his BG is normal and his pancreas stops pushing extra insulin into the blood stream, but there is still some of the injected rapid insulin left to absorb in to his body for the next 1 or 2 hours, this is what is likely causing the low. There are a few ways to tackle the issue 1. Give a bit less rapid insulin at mealtime (change his insulin to carb ratio)
2. Eat lower Glycemic index foods that will take longer to digest, so that the digestion and the rapid insulin run out at the same time. (nuts, fat, berries, egg, meat, etc).
3. Have a small snack 2 or 3 hours after the meal to cover off the end of the rapid insilin shot.
Now I feel stupid... The endo & diabetic educator said they was 99.99% sure he wasn't going to have a honeymoon period, since his A1C was 14 at dx and he'd been sick all summer... could that be it? I just took them at word and thought, "OK, he already had it, prior to dx..." and put it completely out of my mind as a possibility.
We changed his carb:insulin ratio from 1:15 to 1:30 for breakfast and he was ok... back to 1:15 for lunch, and he had a low in the 40's about 3-4 hours later. Until the last couple of days, the lows were always in the a.m., but now they are happening all day long.
How come everything goes wrong on the weekends, or the middle of the night, when you don't want have to page the doctor, anyway?
He was only diagnosed 9 weeks ago. That is hardly enough time to really get proper basal levels set. Having high blood sugars at the start probablly required a lot of basal insulin to bring down. And there are lots of other things which change, if he has gained weight, then generally that will require more basal insulin. But make no mistake, if he is going low during the day 4-5 hours after the last meal, then his basal is too high. Your "impression" is correct, a basal insulin should stabilize your blood sugar in a fasted state. Many diabetics go higher overnight, and kids can have it even worse. Growing kids have hormone surges (like growth hormone) which can lead to morning highs. It may be very difficult to have a flat basal like Lantus be high enough basal overnight without causing daytime lows. I would be somewhat cautious about raising overnight basal and risking more lows. There are other options.
You should not feel stupid,, you are asking a lot of really smart questions and your approach is exactly what you should be doing!! I wouldn't hesitate to page the doctor either, if they made that available. Asking questions here is a very good alternative but, of course, I am **not** a doctor and am wearing a funny hat in my picture. I can see your doctor rolling his eyes if you tell them "some guy named acidrock I met on the internet said..."
To me, the "Honeymoon Period" should be downplayed. It's a period of change that seems to occur but I've continued to change, age, drift, change activity levels (up and down), deal with different situations and numbers/ rates/ ratios/ diets have always changed. The only thing that has stayed the same is things changing!
Maybe not as much as they did when i was "honeymooning" but it was 1984 and I thought testing 4-6 times/ day was "a lot" and was probably just as bad about writing stuff down. Maybe not quite as bad. I'd say that running into the 40s, w/ no other inputs (e.g. PE class, taking the 1/8 mile detour up 3 flights of stairs to walk by hot girl's locker, who knows...stairs kill my BG...)
Holger's suggestion about splitting the Lantus dose is also excellent. I never had Lantus but split NPH. While Lantus is not supposed to be as "peaky" as NPH, a lot of people report peaks appear after they spend time/ test strips studying it. The "fluid dynamics" of large shots will make them absorb more irregularly so two smaller shots should result in smoother curves and stabler basal rates, the "OK Zone" (great term BTW!) that you mentioned in your first post! Part of the situation is that you have multiple curves going on, basal, bolus, food, exercise, etc. and sometimes multiple curves can mess you up at the same time? It's a lot of work but the more you can invest in it, the smoother it will be. I think I was 16 when I was dx'ed and my parents sort of let me run my own show back then but I didn't exactly have a plan. Then I partied *a lot* in college and sort of used insulin like something I'd bought in the parking lot at a Grateful Dead concert. This worked ok and, astoundingly, I survived. Getting a plan early and approaching it in a more responsible manner would undoubtedly have made my life a bit easier. I'd suggest getting junior his own account so he can explore the problems himself?
I wouldn't look at it as a "bad reading" (ok, maybe I would...) as much as good data. If 1:15 is low and 1:30 is high, then the "happy zone" is somewhere in the middle? 1:20 1:22, etc.? You are very close to "winning" 9 weeks into it. That is a *very* good job!
OH, I'm so sorry to hear about your son's diagnosis. It sounds like you're doing a great job though, however tough it is...and it is. How much lantus is he taking? The insulins (both bolus and basal) tie into each other and I would agree, it sounds like he's taking too much lantus. You could indeed split the dose, maybe try Levemir? I'm not sure about the honeymoon, it could be that, it would help to know how much Lantus he's taking (his sensitivity). It's my understanding, as I too went through a 'honeymoon period', lows aren't typically that severe becasue one not only has some remaining insulin but also still has some remaining alpha cells which will kick out some glucagon...but, I could be wrong. PLEASE do page his Endo, it's what they're there for, especially with the lows. You're doing a great job! This is a very, very complicated disease, it changes constantly and it will take a while, months and months, often years to get his levels set as there are just SO many factors regarding insulin and blood sugars. Best of luck to you. I would agree also that he shouldn't be exercising right now. I was told to hold off too until I was a bit more stable, which ended being months after diagnosis as I too would dropped too quickly and was changing my ratios daily.
Ditto, you seem to have a really good handle on the basic dynamics. That IS amazing in 9 weeks!
As acidrock said above, the only thing that won't change is that things constanly change (sorry ar, paraphrase). Every time I have all the variable set right, the diabetes gremlins appear and mess things up for no apparent reason. Yes, Virginia, there are diabetes gremlins LOL. The variables are particularly difficult in growing kids.
Keep on doing what you're doing - small, slow adjustments and loads of questions!
Glad you are getting some great advice. The book recommendations are great, I had my nose in them months before I reached out to the D community (found TuD while researching pumps), now I'm hooked, members are so helpful. My soon to be 16 year old was diagnosed two years ago today. Been reflecting on that, I have learned so much since then, you are already doing a great job by questioning if changes need to be made. Teen hormones can be tough and they are not consistent. You got a lot of suggested variables that can be considered, be Sherlock Holmes, you'll find the answers. Hope your son is coping OK with such a dramatic change of life. I'm still amazed how my son, once he started feeling better, kept right on trucking. I know it hit me harder. As AR and JRT said you can count on needs changing. My best. Emily
Thank jrt! I was thinking about making him a diaversary cake, but decided against it. Ha ha. I think it has hit me harder this year, maybe because I've learned so much or that we come at D with all the tools now? I decided I want to make an awareness video. So many family and friends have no real idea of the extra challenges Nathan has everyday. I've wrote the dialogue for it a few days ago and will probably post it for critiquing on the main page. Look out for it. I'll work on the video that will consist of stills, when I'm off work for 3 weeks starting the 16th. Yay.
Congrats! Two months has exhausted me, I can't imagine hanging in here for 2 years... lol. :-) I guess it's like eating an elephant, though, one bite at a time!
