I also see differences between different sites. Some insertions just don't seem to work quite as well as others. I also use a 2-day rotation. By day-3 my sites tend to work poorly. Since switching from Apidra to Humalog I don't see a significant difference between day-1 and day-2. On Apidra I often used to have problems towards the end of the second day. I switched after being alerted to a study that found that Apidra is much more prone to causing site problems than the other two rapid analogs.
Exactly right Jen and a bolus for a child is usually in the .25-2.0 range, at least thatâs what my friends and I usually give based on the pump calcs.
I have no thought as to where he gets the idea weâre dumping tons of insulin into her. And, with regard to his other assumptions on management: she tests herself, helps change her pod, uses a calculator (weâre working on long hand addition too) to count her carbs, is starting to recognize her lows pretty accurately, etc. I think thatâs awesome for a 6 yr. old!
I know itâs hard for someone to understand if theyâve only dealt with it for a little while, and as an adult. I read books on the subject too, yet even the authors canât cram everything they know into the books theyâve written.
Thereâs no way to explain it any better than it has been by the people who have tried to give specific examples with no avail. But, it makes it challenging when someone, who should be on the same team, questions the rationale of doctors, parents and grown up T1âs with such distaste. Children get tiny amounts of insulin because their bodies are smaller (her doctorâs words, not mine). And like you said, the opposite is true for the higher correction, which again, isnât that much insulin to begin withâŚ
Since youâve dealt with it as a female, since you were young, Iâm sure you know the struggles change from day to day. I tell my daughter, âWeâve got this!â And, she has a close friend (another T1) whosâs her age so hopefully their friendship will continue and they can lean on each other for years to come. 
I agree, I see huge differneces between my stomach, arms, and legs, of which stomach is the most effective. Arms and legs often make me go high so I have to adjust settings up when doing using those sites and back down later. For that reason I tend to stick to my stomach as much as possible, though that's not the best soltuion, either. I only wear sites for two days but often do notice a difference between Day 1 and Day 2, too. But I have issues with reacting to sites, so if I see any highs that don't respond to insulin for many hours, I change the site out regardless of how long it's been in (but I use metal sets, so often changing out early is just taking it out and moving it to a new location and taping it down). What you say about Apidra is interesting because a couple years ago I switched from Humalog to Apidra when I was getting a lot of occlusion alarms. It fixed the occlusion problem, but maybe contributed to my allergic reaction problems given what you are saying. Maybe I should give NovoRapid a try...
Really appreciate your perspective on this. (comment above and the others you have weighed in on).
Exactly. I have no problem telling people of my T1 dx, and what to do if things go south, and unable to help myself. Not long ago, had to treat a low at the market. While paying for my groceries, couldn't remember my pin and just stared at the pad. Ended up telling the clerk what was going on...lol.
Keep commenting Jen...you have lived it and are very qualified.
Excellent. Thanks for the link.
Damn if this topic hasn't gotten people stirred up. My own experience as a 30-year T1 and a parent of a child with a chronic disorder make me sympathetic to where both Sam and Alexâs Mom are coming from. Samâs message really resonates for me in this way: Iâve been through a lot of trends in the treatment of this disease, and there was a long period where studies showing "tighter is better" had our endo's really bearing down on those A1Câs. Well, A1Cs is what we had and to a man with a hammer everything looks like a nail. A 5.5 made your endo smile and you felt like a Good Diabetic, and the fact that it most likely represented a lot of hypos along the way wasnât an issue. In effect you were being conditioned to associate hypos with virtue. Nobody said so, of course, but I definitely picked that up. They were an inevitable part of what got you the Gold Star. But nowadays the proliferation of CGMâs (wish I had one) and pumps means you have a much better sense of whatâs going on on a day-by-day basis and you shouldnât be putting yourself in danger on behalf of fetishizing the Holy A1C. What matters is staying in the safe but controlled target range as much as possible, not some single number it all averages out to over several months.
But while this is great, it isnât necessarily helpful if your kidâs condition is such that veering out of the target range for unpredictable reasons is a fact of life. I donât hear Alexâs_Mom as saying Sam is wrong in principle, just that the principle is somewhat beside the point given what sheâs dealing with. Kids who are going through rapid and profound physiological changes are a different problem. As a parent in an analogous situation, I stand in admiration of how far sheâs gone in trying to explain all that because I know my own patience runs very short when talking with someone who hasnât directly experienced what Iâm dealing with triesâwith the best of intentionsâto advise me about it. The variables and constraints and contingencies of what youâre going through can exceed what you can adequately convey to your specialist, let alone fit into an online comment thread. And there is, to put it mildly, a fairly deep well of anger and frustration that can be tapped when, despite your best attempts, they donât seem to be getting it.
I guess Iâm being presumptuous myself in weighing in like this but it concerns me that this discussion is getting so vehement that people may be alienating each other in a place where we all come for support about something that so profoundly affects us all.
That's fantastic that she has a close friend who also has Type 1! I knew a few Type 1 kids when I was growing up, but was not relaly close friends with any of them, even when a friend of mine I'd known since grade 1 was diagnosed in high school. As an adult, I have one friend in particular who is around my age and was diagnosed around the same time as me (both in age and time period). It's great being able to rant about the frustrations and also celebrate the successes of diabetes with someone who is coming from a similar experience.
I agree with you, DrBB. I'm amazed by the negative, cruel comments posted here about this family. "making a show of the supplies", hum, well, that pretty much looks like my cabinet of diabetes supplies. If I was a parent of a type 1 child, having been diagnosed as an adult and knowing how difficult this is for ME, I'm sure I'd hover, too. Whether good or bad it would just be my natural maternal instinct to do it especially if I'd known other type 1 children whom had died. Those who say or inflect that they've never had a bad low, seizure, passed out...well, good for you. Talk to an EMT, an endo, someone who works in the ER, can't even imagine how many insulin related medical emergencies they see daily. To minimize what this disease is for most does nothing to promote fund raising and awareness for the disease. I'm even more astonished reading from type 2's who write negative comments on here whom have no idea what type 1 is about. unbelievable!
I too crash in the middle of the night, has nothing to do with basal or may have everything to do with basal or the amount of activity the day before, morning of, intimacy that evening...too much bolus lingering with the basal, who knows. i can also spike sky high too.
+1, I'm exactly the same as are many. I might add, I think those of us, whether children or adults, who are very insulin sensitive (myself) and don't take a lot of insulin may tend to have a bit more of a challenge. IDK...I've been told I'm 'brittle or liable" or whatever..so it's not only chidren whom fluctuate drastically.
My new theory: I think the girl from the video has glycemic instability. Some estimate that 50% of diabetics have poorly adjusted medications that contribute to this type of severe instability. IDK. We all know that the system is, by nature, unstable. But, some are more unstable than others.
But saying it's poorly adjusted medications leading to glycemic instability is just saying the same thing that others have said - get the settings right and everyone will have stable blood sugars that only need tweaks and all major highs and lows will be attributable to some modifiable cause.
Maybe you're right. But I've made major adjustments to my basal rates over the past month in an attempt to even out my overnight blood sugars and still have numbers that are often extremely inconsistent from day to day. The night before last my blood sugar rose from 100 to over 200 throughout the night. Last night I went to bed at around 100 and then crashed low and ran low for hours, having to consume about 40 grams of carbohydrates throughout the night to wake up around 100.
I've been doing diabetes for over 23 years and have always been engaged in keeping it under control - especially the past 10 years. I find it hard to believe that I have still not figured out my insulin needs while others have nailed down theirs perfectly in a tenth of that time. I think there's something physiological, other than incorrect insulin adjustments, that cause some people to be highly unstable despite best efforts while other people are able to achieve stability with relative ease. Otherwise, what is the explanation for my example above of having such differnet results with the same basal settings (and no extra exercise or IOB at bedtime) or the examples others have given in this discussion of rapidly changing blood sugars with no warning and no changes in their insulin regimen?
I think some of the guys are 'ping ponging' the sugars very effectively between their designated control limits. Thats not the same thing as finding one suitable dose that produces predictable behavior. Sometimes I think what they do is better, but in some ways its worse. For instance, I think I could have ping ponged my BG into stability at 35 Units of Lantus, but I would have been taking a much higher dose than the 27 units that I used yesterday. Its awful tricky. Different cost and benefits to each strategy. Either way, you have to wach it like a hawk. We should NOT expect the simple linear algorithms that the Doc's give us to actually work. Its widely recognized that they do not. Better than nothing, though.
Just outta curiosity, how many different basals are you using on a pump, Jen? I'm still trying to pinpoint one appropriate manual injection bolus that I can live with. I'm having a hell of a time. I had a major decrease in extreme highs after dropping the Lantus 10 units. Strange progress.
But I think in Type 1 "stability" means ping-ponging between your target range. No one with Type 1 (unless they are still producing some insulin) is going to have perfectly stable blood sugars with no adjustments at all, becasue there will always be factors like stress and illness and such that we can't control or predict. But those people who are able to ping-pong really well obviously do have some predictability - otherwise a temp basal rate would work some times and not others, or a correction would send them low one time and work perfectly the next, or their basal rate would seem completely off one day and perfect the next. Maybe they do have this same level of inconsistentcy, but I personally don't think they do. Everyone's body is different - kids and women and people with other health issues have things that impact blood sugar that others don't - so I don't think it's possible to say we are all the same.
My pump right now has six basal rates. I am actively working on this, though, so six may be too much, and some of them might end up getting merged. I started the pump mostly because I was never able to find a Latnus dose that kept me flat throughout the day - I was waking up every night at 3:00 AM to dose 2-3 units of Humalog and I couldn't skip lunch (or eat late) without going low and was having highs every day after dinner. The weird thing is that with the basal rate changes I've made, it seems the dawn phenomenon has completely disappeared - at the moment my highest basal rate is at 12:00 AM and lowest is at 3:00 PM. Last night was thankfully pretty uneventful compared to the previosu two (varied from 86 to 142 based on my tests).
I dunno if I'm convinced you need a lot of stability to ping pong. I think I could have ping ponged in a pretty severe state of glycemic instability. I don't know.
Jesus, six? That's incredible. I don't think you should ever assume that anything you do is gonna keep you flat line throughout the day. I don't know if that should even be a goal. I don't know, I'll have to think about it.
My strangest hang up about it might be that, sometimes I feel better when there is instability in the system. For instance, if I'm exercising, I can feel pretty good even though the system is bonkers. I think my body is pushing me extremely high because maybe its supposed to output that kind of energy, or something. It seems to be doing something that its supposed to do, something I don't, necessarily, want to prevent it from doing. I don't know if that makes any sense...
Of course, I'm not saying that anyoen can get certain settings figured out and then just leave them for days and weeks on end and expect to stay perfectly in range all the time. Meybe there are a few out there who can, but if that were the case, diabetes would be really easy!
Based on the people I've talked to, they seem to get one basal rate that holds them relatively steady overall, and then use temporary basal rates on top of that and make tiny tweaks now and then to maintain stability. This is what I'm working towards. Last night I varied by 56 points, which is obviously not completely stable, but if I could get every night like that (instead of 100 points up, then 100 points down, then 40 points stable, then 100 points up...) then that is my goal.
It would be interesting for some of the expert ping-pongers to chime in and say whether they feel their blood sugar is stable or unstable when they are going about their day. My guess would be to ping pong with an unstable blood sugar you would need to be constantly stopping what you are doing to bolus for a high or to eat a ton of carbs to prevent a crash. I've managed some days where I've stayed within my target range (70-180) the entire day, but then I try the same thing the next day it goes completely crazy. So the efficient ping-pongers are either constantly interrupting their day to make corrections, or else they have found settings that keep them generally stable (like varying by +/- 30 points throughout the day) and just make little tweaks throughout the day.
I guess that's what I imagine they are doing - checking and adjusting constantly. Is that what you guys are doing, Unicorns? Gotta track down Terry and inquire about his 'Terry Phenomenon,' on flat-lining. Maybe he will reply.
I'm using 22 basals these days...I don't believe it's possible to get the same control with Lantus or Levimir. It's possible to do very well but I see a bump in my insulin need in the AM, and cover it with basal then it's ok all day and, at the end of the day, it seems as if I need a bit less insulin. I think that I have it up a bit in the evening but that seems to help cover snacking and eating dinner while I'm cooking it and all that. I know lots of MDI folks who do very well but I suspect that they're covering something one way or another.