FUDiabetes

Finally back down under 7

After being under 7 once with Liam, as you may recall, we switched Endo teams. My hectic regimen was recommended to be scrapped for a simpler regimen. Being the open-minded person I am, I said OK…I’d give it a shot. After the first 3 months, his A1C was 8.5. I wasn’t happy. But we continued tweaking and working toward bringing it down. We had our 3rd Endo appointment yesterday with the new team and we now have Liam back down under 7%. He came in at 6.9. I’d like to get down to 6%, but I’ll be happy for now…in this crazy toddler stage, if we can keep him between 6 and 7%.

The only problem is that we did have lows. Average of about .75 per day over the 90 days. So nearly 1 per day.

So although we’re happy for the results, we don’t want to get this A1C as a trade-off for lows. We must get both a great A1C AND not so many lows. So there is always work to be done…some of it is us not paying attention every second of every day (for instance…paying attention to when he’s been bolused then fed for every meal…if the food comes late, he could go low.) That’s on us…there are also instances (at night when I’m dead tired) when I have bolused him while he sleeps when his CGM reads high, but he may not have actually been high, because the correction takes him low. Lesson learned there for my wife and I…we HAVE TO do a finger stick EVERY SINGLE TIME we correct either with insulin, or a snack/food/juice/tablet; otherwise, there’s a chance we’re just wrong and he’ll go too high, or low.

2 Likes

Wonderful news, congrats!

We should give Liam all the credit. :wink:

Can you expand on this a little bit? What was it that your Endo did not like?

I had between 10 and 15 basal programs based on different times of the day. She mostly didn’t want us having that many. Other things also, but she wanted us to get a simpler 3 - 5 basal increments to start.

The one thing that has not changed with all my programs are the lows. I want to cut back on those as much as possible while still keeping the level A1C that I’m comfortable with for him right now. That’s the tight-wire that any diabetic (or caregiver of a diabetic) has to walk.

A lot of what I consider Lows, some of you wouldn’t even consider lows (60’s). There were very few 50’s, 40’s and one or two 30’s.

Congrats! I can totally relate–I am trying to work my way back to 6.5 (or better) without the lows… Where do you set the low alarm? I find earlier intervention can intercept low trends.

We have it set to 100. A lot of the lows were caused because the CGM said one thing and the finger stick said another…they can be way off sometimes. I know many times we’ve been ready to feed him…his CGM read over 100, but his actual BG was under 70…so instead of feeding, we have to correct and wait.

1 Like

I have had that same type of response from several people in “the business” and I have largely ignored them. I had 12 different rates set on my PDM, and that apparently bothers some people. I don’t understand why. Once they are set, you don’t have to do anything extra. Having 10 rates or 4, once they are in there, it’s doesn’t add any work.

The non-diabetic’s body constantly adjusts to different basal needs. I really don’t understand why it troubles the “experts” when we do something like that on a pump!

Whatever works best for Liam - do that!

1 Like

Harold,
I am confused by this. If he is under 70, you wouldn’t start the meal? You correct the low first, and then later start the meal?

That’s what I said wasn’t it?

Our intent was to feed him because his CGM read over 100. But after taking the pre-meal finger stick, we found that the CGM was wrong and that his BG was actually under 70. So INSTEAD of feeding him, which we intended to do, we have to CORRECT him first…then feed him once his BG is up some.

Oh, I just read your question correctly this time. lol. Yes, if he’s low we correct first. We have to get fast-acting foods into his system to raise up his BG. Can’t feed him and hope whatever he’s eating eventually works. First priority is raising the BG to an acceptable level. Maybe not a big deal for a grown up, but lows are much more serious for babies/toddlers.

Ok, that’s what was confusing to me. That you don’t just join the meal with the correction.

For example, I usually have milk or beer with dinner. But if I am low, I might have chocolate milk with my dinner instead.

I find being low or on my way down when I start a meal is the best, because you don’t spike after.

I just found it interesting, it’s a lot different!

EDIT:
Not suggesting beer with dinner, but chocolate milk might not be so bad!

I also do as @Eric describes, though usually with 2-4 ounces of OJ. And depending on what else is in the meal, I may hold off on my bolus for 10-20 minutes.

@ClaudnDaye, such great news!! Terrible connectivity here on side of country road but will comment more later. Really GREAT!

My problem is that a tablet or other correction doesn’t always produce the same results. One time it may not move his sugars at all and other times it may spike him 1 or 200 points! So, we wait to correct, make sure it’s back to normal range, then feed. Not sure if things are always the same the older you get, but with a kid Liam’s age, each food reacts differently pretty much all the time…at least for him.

What challenges parents of CWDs face! :scream_cat::heart_eyes_cat:

Great work!! I’m so happy you guys have made such great progress. This is tremendous progress in a few months!

One thing: What percentage of time did you spend below 55 and 70? I think that’s the critical factor. It seems, based on this AGP report that is showing up on Clarity, that we should be aiming for less than 0.5% time spent below 55 and less than 4% time less than 70. I am guessing the toddler requirements are a little more stringent at least for time under 70. And I get that even a small decrease in time spent low can feel very different if it means you’re not correcting or preventing lows every.single.day – so there are sometimes life-circumstance motivations to eliminate lows. But i’m just wondering how his percentages came out?

Samson spends about 0.5% time below 55 on Dexcom (less on finger stick I suspect), and our Endo seems fine with it. Time below 70 has gotten a little high in the last 3 months but in the last month we’ve gotten it down to where we’re happy with it (<2-3%).

I also think it’s useful to start asking Liam if he can feel lows. For us, whether Samson feels low is a good indication of whether he actually is low. Maybe not always, but, for instance, 75 is too low if he’s running around, whereas if he’s just watching TV 70 seems to not feel low to him. I’m just assuming that these differences actually correspond to physiological differences inside his body, and that he’s not getting the damage of a low at 70 if he’s sitting still and feels fine. Assuming hypoglycemia unawareness is not a thing.

We’ve been trying, but I guess we’re asking the wrong questions? When we know he’s low, we are asking him “how do you feel?” He always says “I feel OK”…not a lot of help. What types of questions would be good for someone our boys ages?

So interesting as we find the opposite with Samson most often! Yesterday Samson plummeted to 59 on Dexcom. We tested – he was 77. Happened twice. It definitely overestimates the depth of the lows for sharp drops and in the last 7 -15 days on a sensor. Just goes to show that every body is different – even two three-year-olds are having very different experiences.

We started out doing exactly as you are doing, i.e. correcting then eating. I can offer nothing of value for what works in your toddler, but I can say that as he gets older you will be able to get away with just uncovering parts of a meal to correct a low. We started doing this because there weren’t enough hours in the day to wait to eat, with our hectic schedule. So we started doing it by necessity and found it works fine.

With a toddler and the challenges with digestion changes, as well as the frequency of bugs that little kids pick up, I would definitely be more conservative. We have had cases where dinner doesn’t raise him as expected and we have had to treat after a meal, and the treatment was sluggish due to the food already on-board.

Something to look forward to.

1 Like