Making decisions with so much unpredictability

How on earth do you all do it? I don't expect to be able to "control" Caroline's numbers, but clearly there's room for improvement in how I manage her #'s. My question though, is how do you make decisions when the info you're basing it on may no longer be relevant?

I almost gave her a full unit with breakfast today because all week long we've been putting up with mid-high 200's going into lunch. At the last minute I decided, No, wait until the weekend when she's home, so I stayed at her normal .75.

Then this morning we had an event at school where the kids got pretzels and I let her have 8 extra carbs on top of her normal 15 uncovered. I thought, she's SURELY going to be really high now. Her pre-lunch BG was 150, her target. So it worked out okay on a *fluke*.

Another example. Our CDE said not to correct unless over 300, which frustrates me to no end even though I know she has her reasons. Well yesterday at 3:30pm Caroline was 241 with no IOB so I though I'd do a .25 correction. 2 hours later she was 74, so it was too much for her.

Fast forward to during the night 12:30am and she's 286 (even though she went to bed at 127). I decide that I'm not leaving her that high all night and even though she's normally more insulin sensitive at night I do another .25 correction. I check her at 1.5 hours and she's still 222. So not nearly the same effect.

Sorry for the long post, but how do you make decisions when there's no firm basis for anything? I don't even know if there's an answer you can give me, maybe this is a half-rant, half-question. Thanks for putting up with my constant questions BTW.

 

With those scenarios I cannot blame you for being frustrated. It seems like something is off somewhere. You are on MDI right - and not pumping? How do you determine the IOB?

Could the lantus be peaking in the day and running out at night before 24 hours is up?

It sounds like she is still super sensitive to insulin - and I'm wondering if giving insulin by syringe (or pen) the amounts could be slightly more or less than you think? We had to use diluted insulin (at the time humalog was the only one that sold a dilutent and a compounding pharmacy had to prepare it for us). William was so sensitive to insulin I could not hardly give corrections. With the diluted and the half unit marked syringes I could do a somewhat better job until I could get him on a pump. Pumping is SUPER helpful for giving teeny doses.

Just throwing out thoughts here - YMDV and all that.

 

I think we all just start to see patterns after a while so that it doesn't seem so unpredictable, though there are tons of exceptions just when you think you've figured it out! After a while, Molly learned that corrections at night (for her) needed a bit more umph because she noticed just what you did with the .25. After lots of trial and adjustment you really do notice patterns and it makes it less daunting. And you should trust your gut feelings like you did...making changes on the weekend is a great idea so that you can test more frequently. Still, activity level might be more in the weekends so you might have to take that into consideration. It is such a juggling act!

 

We are on MDI and she gets 1 unit of Lantus at breakfast. When I said no IOB, I meant fast-acting. There could definitely be some slight variation with her syringe dosing, especially when I'm trying to do it to the .25 unit. We see our CDE next week and I'm going to ask about diluted insulin and when they were thinking pump. The pump sounds so beneficial in so many ways, but with her TDD being about 3, I was thinking it's too soon. I'll see what she says.

 

Yeah, it's really not fair. Who can I see about my complaint other than you guys? lol That's why this board bears the brunt

 

Did she still go high?

It depends on the pretzels, was it the little sticks or a fat thick one? I have found pretzels to be tough to deal with because they do not begin to act on the system right away.

74 is not too far out of range AND you got her bg down instead of leaving her at 241 or higher. I think you did the right thing and I would totally question the endo wanting to not do SOME type of correction until 300.

What was for dinner?

It is very frustrating, you are right. And the best we can do is simply do the best we can do. Keep good, detailed, accurate notes. Sometimes you will see patterns and sometimes you won't. But at least you are trying and even though diabetes is a moving target of sorts, I think the best way to deal with it is to accept that you will not get it right 100% of the time and just feel good that you are at least making an effort.

As my Grandpappy used to say: Some days you get the Bear and some days the Bear gets you.

Substitute Diabetes for Bear and there you have it. :cwds:

 

You have to look at every hour as a different scenario. The action of Lantus is pretty flat. There is a little peak, but not much. On the other hand, your daughter's basal needs might go up and down a couple times a day with wide swings. When her basal needs are met with the Lantus she will be very sensitive to Humalog corrections. At other times, when her basal needs are not quite being met with the available Lantus, then Humalog corrections won't work as effectively.

In addition, different foods will require different amounts of insulin even if the carb count is the same. Activity, excitement and digestion all play a role which you can not control.

It took me at least 6 months, if not a year, to feel like I had a handle on diabetes. I'm not saying we don't have any highs or lows, just that I feel the insulin level is as accurate as it can be.

Another thing I have noticed is that when my dd's basal is too low, we get wild swings. Sometimes a slight increase in basal will suddenly smooth things out. On the other hand, I have read on this list that too high of basal also brings about wild swings and that reducing it was the answer. It's all trial and error!

 

Thanks It was 8 mini pretzels. dinner was spaghetti and meatballs come to think of it. But she seems to get a rise after bedtime every night, some rises steeper than others but they always seem to be there.

 

This is what I was trying to say! Well put!!

 

That 1st paragraph about her basal needs sounds like a big reason why a pump would be helpful. I had never thought of the relation between her basal insulin and correction needs. Thanks.

 

You can use diluted insulin in pumps also however you may not need it. Sean was using ~3 units per day when he began pumping. 1.6 units of that was basal. The biggest benefit I found with the pump was being able to deliver the small amounts of insulin he needed with accuracy, 0.025u. basal and 0.05u. bolus, something I could never have done with a syringe but very much needed. As far as predectability though, the only thing I've found to be predictable with diabetes is that it's unpredictable (with or without a pump). For that I use the Dexcom 7+, which shows me just how unpredictable it all is.

 

That's all good to know, thanks. I'll bet a dex would show all kinds of things going on I that I don't know about. I tend to test quite a bit I think, but I always wonder!

 

I have the sort of unpredictability in your first post, pretty much caused by basal needs which vary on a daily basis. CGM has been really useful for me.

 

You can not look at the whole day when thinking of changes in the beginning.

You either need t start with breakfast or night numbers, try to get one straigtened out first then more on to the next meal numbers.

When are you bolusing and then when are you checking?

we started pumping at 18 month because drawing up .25 was no fun and unpredicable at best. The pump was what we needed, not that it got better quickly but it took Lantus out of the equation of variables. Looking back now< Lantus did have a significant peak and did not last 24hrs at her small dose or .5-1.5 prior to pumping.

If you think the pump will be a benifit for your family, ADVOCATE for your child to get it as soon as insurance will allow.

You are asking much more detailed questions than I did even after getting the pump, you sound ready for the challenge!

 

Sweetie, please! You've only been at this a month. You are doing fine and are making an effort to notice patterns and are learning a lot. Part of what you're learning is that even if you do everything right, it might still go wrong. That's the nature of the beast.

But at only a month in your child may have some beta cell funtioning playing a role. And basal needs change throughout the day, but lantus is flat, so the difference is made up by different carb ratios at different times and corrections. Add that to a very imprecise .25 units in a syringe, plus the fact that night is different than day and activity will drop bs, and no wonder the kid is all over the map. Oh, and she has D.

You are doing great. Just do the best you can and keep trying to notice patterns and keep logs to take to the endo. Send bs logs in every week or every other week. Eventually she may level out a bit and certainly you will know which food affect her and how. Not all carbs are the same. and spike might be caused by timing, rather than amount of insulin.

Oh, and once you have this all totally figured out, . . . it will all change and you can start all over. B/c they grow and their activities change and they get sick and their hormones rage . . . you'll get the hang of it.

 

I'll let the number gurus deal with the specifics, but wanted to encourage from a different level.

We want diabetes to be scientific, it's what I struggle with most in fact. There is science behind what we are attempting to replicate but the truth is that our bodies act intuitively, and so will you, eventually.

What you are struggling with is the ART of diabetes...the feel for what to do when that you truly WILL develop.

I am constantly amazed at my son and his innate intuition for his body and what it needs. He looks at a plate of food and will know the actual carb count and the insulin needed....and he'll intuitively adjust based on other factors going on all the time. It's almost eerie to me, but that's the art part of diabetes.

It isn't something someone can teach you and some people are better at it than others, I'm abysmal at it...I want to approach it like a science all the time in fact!

Luckily he is superior at it, and as time goes on you will definitely develop a feeling that you will learn to trust, you've already shown that in several of your scenarios above...that "maybe I should...." feeling. Time and experience and a bit of luck.

 

Thanks for the recent replies too, I've read them and taken them and your support to heart.

Apparently D doesn't let us iron out one issue before giving us another. The nurse just called, she's 64. So having some cake gel and a snack as we speak. Now to figure out why...

 

Lantus has a huge peak for us, it hits between hours three and five and can drop her 50 to 100 points. We used to use the peak to combat breakfast spike, now we use it to combat the dawn phenomenon. But's it's very real for us, as is the tailing off at the end of the Lantus day.

Pumps are really good for small dosages, but fwiw we think we found that the absorption made dosing less predictable, so if unpredictablity is what you hate! Still, I think that was after we'd been using it for two years and there was some absorption problems from scarring, etc.

We found in the early months (years!) that there was no getting around that you need to log in a format where you can see the big picture and you need to test a ton. For us, it would have been no use to log four or six numbers a day, we couldn't see the patterns. We'd have to log up to 15 numbers a day as well as the food and activity. What a pain! But it helped us learn, so that much of what I do now is internalized, and I confess we haven't logged in probably a year and a half!

Then you start to get a feel for it, although it's still good to print stuff up or write stuff down sometimes to get a fresh take.

A few things that I've noticed when mine was little, and it might not be uncommon.

1. My kid takes far, far less basal insulin than she's "supposed" to . Like, 1/4 of TDD is Lantus, when it's "supposed to be" 1/2.

2. Our duration on the insulin is much longer than many here. Some here see the end of humalog at hour 2, I think it's "supposed" to last 4 hours, we see a tail up to 6 hours after.

3. Where you inject can matter. There's the infamous "Lantus goes in the booty" tip, but I just read a link from someone here (Emm? maybe she commented on it?) that, for example, an abdomen shot can work much faster. I've given Selah shots in the stomach twice lately and she's crashed -- it might have been a coincidence, but I find that while you're supposed to rotate (and really should) when you rotate too wildly you add an element of unpredictability.

4. Age of insulin, leak back, and the kidding getting active or warm after injection can matter a lot in the little body.

5. Digestion moves at a way different pace in small kids. I'm noticing as Selah gets older how much more it takes to budge a low, used to be 5 grapes and she's out of the low and watch out for the high within 10 minutes, but now we often have to give her far more carbs and wait far longer for the sugar to get into her blood.

None of which addresses your post, but I think part of what you've got going is that there are just a lot of wiggy issues with small kids. To a degree, you have to set your parameters on safety ("I'm only comfie letting her get this low at night", etc.) and time ("I'm only willing to devote X many hours to testing and adjusting, we have to live!") and then do your best with what you've got as you gather info and internalize the process, then revisit the whole thing in six months when you'll be ready to change your goals on safety and time and be able to do much more on instinct and art instead of by looking at raw data, and the data will puzzle-piece together better for you.

It's a ball!

 

That's always the question, isn't it? Just have to remember that sometimes, there isn't a why, or at least one that we can see.