So, today was our first visit with our new Endo team

Type 1 and LADA Parents of Children with Type 1 Diabetes
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Last Endo appointment with our old team Liam’s A1C was 7.9. Today, his A1C was 7.2. So we’ve gotten him down by .6 over 3 months. I’m very proud of that. His current “14 day average” is now 6.7%.

So, here’s the bad part, though…the team wants us to “scrap” my program…which they agree I’ve done phenomenally with but it’s unsustainable and will burn me out eventually, and it also didn’t make sense to them.

They said I’m using too many basal intervals during the day (I had about 10 created per day.) :stuck_out_tongue: They also said they want me to stop “feeding to the insulin”. My old program had 3 specific time frames that he ate every day and during those times I increased his Basal (this was in an attempt to get his basal/bolus ratio’s around 50/50 (never got 50/50, but 40/60 and 45/55 often times using this method.))

They gave me 4 Basal rates that they want us to run with right now. Those rates are between 12AM - 9:30AM he will be set for .05, but we will be suspending that because they loved his nighttime numbers that we’ve been having by suspending all insulin at night. They want a rate of .25 from 9:30AM - 4PM. From there, we are to drop down to .20 from 4PM - 8PM. From 8PM - 10PM, we are to go to .10, then from 10PM - Midnight, drop back down to .05 (which we will suspend probably at around 11PM to zero.)

Additionally, I had two different target BG’s created…110 during the day when he’s awake and I was able to monitor and correct as necessary, and 150 during the evening and night. The team recommended I go with just 150 for the whole day at this time. Once we figure out the right basal/bolus rates, we can bring down BG target rates.

These are the “major” system changes that we are going to start incorporating tomorrow.

Now…I didn’t “change” his profiles that have been working for him because it was a lot of work and I didn’t want to lose that data in the event this whole thing is crap. I knew my system, as wonky as it might have been and I was constantly tweaking as I saw problems with Hypo/Hyperglycemia.

They (as all Endo teams are) were most concerned, right now, with setting up a successful program to prevent, or significantly minimize the “lows” that we do get more than I would like. We would get even more lows if we didn’t give snacks sometimes to prevent the lows from occurring.

So the plan with our new, high speed low drag Endo team is to work together to find the right bolus rates. They were not as concerned right now with the Basal rates because they didn’t think the amount of basal insulin he was getting was that significant for a child his age anyway. So they wanted us to first just use the basal program they want him on, and work on testing bolus rates right now.

The last big change is that me being the OCD person that I am, I would rush to correct a high BG after a meal if the PDM recommended that change. The problem with me doing this is that this has often caused lows for whatever reason. They said that it will be impossible to iron down the correct bolus rate if I correct before 3 hours have passed, post-meal.

So, in addition to the changes above, we will be annotating all meal info, bg, bolus time, etc., etc., and we are also annotating the time his meal finishes. I will not test his sugars until 3 hours post-meal.

From this point, our recommendation is that if his BG is > 30 point HIGHER than his pre-meal BG, we are to move his I:C DOWN to 1:30. If, on the other hand, his BG is > 30 points LOWER than his pre-meal BG, we are to move his I:C UP to 1:34. And as each meal and each day passes, we are to continue tweaking his bolus rates based on the tests from the meal/day.

The goal is to get his BG’s to equal too 150, or within 30 point higher or lower, 3 hours post-meal.

This makes a lot of sense to me and it also allows me to no longer need to have him eat a specific times…some mornings we want to sleep in, but because my old profile was set up how I had it we had to wake to up feed him. This way, he can eat anytime he wants throughout the day.

Regarding elevated BG’s post-meal, they didn’t want us to take any action BEFORE the 3 hours was up, regardless of how high the BG reached. The short term spike in BG (they indicated) is not going to affect him as much as the lows he is getting more frequently than any of us want him to get. IF; however, we are able to dial in the bolus rates to find what works for Liam, and IF we are seeing some bad spikes above 250, once we have his bolus rates dialed in, we can begin lowering his basal target from 150 and move down to 145, 140, 130, etc., This would also mean increasing his overall basal rates to go to a lower overall fasting BG, which would cause his mealtime spikes to not spike as high. But this will be further down the road.

Anyway, I wanted to share the good news about Liam’s current 14-day and 90-day AIC’s and also some positive news regarding the new Endo team.

I told the team that I was basically figuring things out for myself with the help of this supportive community, but the reason we joined up with them is because they are a nationally ranked Endo team and I know they understand the disease and hopefully will be our partners in working to ensure Liam is healthy now and later. I let them know that, although I’m OK for now with post-meal spikes, what I haven’t ever been…and won’t ever be…OK with, is him “living” in the 250’s/300’s or higher as he was with our old endo team. Chronic Hyper’s won’t ever be OK with me. They agreed.

We are all on the same page and I’ve got new profiles created and ready to begin this new journey tomorrow with a great team, with a great goal, with defined reasons for why they’ve asked for things to be as they’ve asked and we’re looking forward to dialing in his numbers even more in the future…maybe not at first, but eventually.

What I really liked was that they had a plan for us DAY 1…our old team had no “plan” other than to say, “Welcome to diabetes…good luck”, basically. If this nationally ranked team of Endo specialists feels we need to do what they’re telling us to do, I’m not haughty or arrogant enough to dismiss their knowledge until they prove to me that they can’t control his numbers like I can control his numbers (with my own wonky ways of doing things.) I’m going to give them a fair shot and so far my wife and I really liked what they had to say, and the advise they had to offer us.

So, that’s where we are right now!

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Glad to hear you are pleased with the new D-team! And congrats on the lower A1c! :medal:

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Glad you found a good team. I agree with them regarding the tendency to over complicate basal rates… it’s a human nature thing IMO. Hope their guidance helps you reach all your goals.

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It looks like you had a good exchange with your new diabetes care team. I hope you’ll be able to contact them more frequently in the beginning so that you may agree to changes to this initial plan. I think the biggest mistake people make with diabetes is seeing their doctor, making some changes, and then no contact for 90 more days.

I was glad to read this. Good luck with your new plan!

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Glad you found such a good team. What they say makes a lot of sense (I agree, too, that 10 basal rates is a lot…probably too many for most). Good luck tomorrow and in the days to come, and here’s hoping the new plan of action works well.

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@ClaudandDaye, that’s great! Don’t be shy about checking in with them every few days as you tweak.

I agree in general that so many basal rates are probably unnecessary – this is what Stephen Ponder says in his book Sugar Surfing.

We have a bunch programmed for us because we are using them for the artificial pancreas, but that’s because the notion of basal rate has essentially been decoupled from its original intention. The basal rate is overridden so many times a day that we’re essentially using it as a flexible fudge factor to ramp up or down basal rates for meals. But the conventional wisdom is that it takes an hour for any change in basal rate to show up in blood sugar numbers, so if you have 10 of them, you can probably slash that in half at least and still achieve comparable results.

Also, if you don’t mind my asking, how often was he actually going low, versus just having to feed the insulin to prevent anticipated lows?

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% of the time spent in low over the previous 90, 30, 14 and 7 days:
90 Day Low is 4.1%
30 Day Low is 5.3%
14 Day Low is 5.5%
7 Day Low is 3.4%

I would double those figures if you could those times we “corrected” so that he didn’t actually end up going low.[quote=“Tia_G, post:6, topic:57672”]
The basal rate is overridden so many times a day that we’re essentially using it as a flexible fudge factor to ramp up or down basal rates for meals.
[/quote]

This is also why I had so many intervals in play. 3 for each of the “meal time” rates (each 2.5 hours long…for instance he would eat at 10:30, so my morning rate was in play from 9:30AM - 12PM…always 1 hour prior to meal time to allow time for saturation into blood stream), 3 rates (each 3 hours long), for “post meal” times (usually following the big “mealtime” rates, and these were set to .05), then the last 3 were .10’s “leading up” to mealtimes…I know, an overkill…but it was working. :stuck_out_tongue:

I was proud that, at least for the past 7 days, he was “in target” 72.2% of the time. 24.4% was OVER the rate (High BG’s), and 3.4% was UNDER (low BG’s)

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It depends on if that low percentage is below 70 or below 80, but to me being below 80 mg/DL 3% of the time seems totally fine – assuming that, say, less than 0.5% of time is spent less than 55. I agree it isn’t great to feed the insulin (which on its own promotes weight gain) or to have baked in lows, but on the other hand, there is a costs/benefits threshold. If decreasing those lows raises A1C 0.2, maybe it’s not a big deal, but if it results in a 0.8 percent rise in A1C, I would see the risk of lows and too much insulin as the price of admission to reduced risk factors for complications.

Honestly, I think the basal/bolus model is what will be scrapped eventually, especially for people on a pump with a CGM. It’s a great idea for a person who is giving themselves shots all day, and can’t see lows coming on – you really want the blood sugar to be very steady and stable in between because your’e only going to know about a low when it gets really bad and symptomatic, and you want to get the best control you can with the most minimal number of shots. But the ability to see and forestall lows, and to give yourself microdoses all day long, makes it seem very crude at best.

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A big reason for many of our lows that we didn’t (or weren’t able too) correct were ones where the CGM receiver said 90 or 100, but a finger prick check indicated his BG was 50! Sometimes our CGM is way off…we have a new order being shipped to us as this last one has the battery warning so we’re entitled to receive new ones. Not sure if that’s what’s been causing the false numbers lately, but our CGM (Dexcom G5 Platinum) isn’t as accurate sometimes as we wish it were.

During this period, we had our lowest low yet…at 35. We’ve had a couple 40’s, and the rest between 50 - 79, whenever we do get the lows. Most of these we could have avoided had the CGM been “accurate”. Not sure if anyone else encounters this, but we do currently.

Thanks for all the wonderful info!

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Our CGM is sometimes way off. We have had better results lately doing what I think is called a “hot swap”. So we insert our son’s sensor into his second arm before removing the first, then let it warm up in the area. Then after about 12 to 24 hours, we switch the transmitter over to the new sensor, remove the old one, and start the warmup period.
The logic behind this is that the sensor needs time to settle into the interstitial fluid and for whatever injury occurred there to settle down. Once this happens the readings become more accurate (this is why they have the normal 2-hour warmup period), so when you calibrate for those first two readings 24 hours later, you’re likely to get better performance.
The downside is that you’re basically sacrificing a day of sensor life if you use them till they fail. If you’re changing them every week regardless, it might be worth it to do this. It doesn’t fix all the times when the sensor is off but those first 24-48 hours are usually our worst times (other than when the sensor is failing).

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I have found the delta values from my smartwatch to be the biggest tool I use when determining impending lows. For example, while I was outside mowing I got a “falling fast” alert and noticed the delta to be -30. Even though he was still in the 200’s after his meal spike, I knew that rate of falling was too fast–so I ran inside, slowed it down with a few fruit snacks for a nice soft landing. I have noticed that Dexcom is not accurate during a rapid drop. When deltas are -20s or higher, I can expect 80 pts lower than what is displayed.

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Yes! Second this! For instance, today was a wild roller coaster and his blood sugar had been awful as a result of Dexcom just constantly playing catchup.

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[quote=“Tia_G, post:10, topic:57672, full:true”]
Our CGM is sometimes way off. We have had better results lately doing what I think is called a “hot swap”. So we insert our son’s sensor into his second arm before removing the first, then let it warm up in the area. Then after about 12 to 24 hours, we switch the transmitter over to the new sensor, remove the old one, and start the warmup period. [/quote]This is brilliant! I’m kicking myself I didn’t think of it after I started using xdrip.

xdrip allows you to set the time the sensor was inserted. So, the warm-up can be bypassed entirely by spoofing that the sensor was inserted 2 hours earlier than it actually was. I don’t do this, but the ability also facilitates what you describe above, without then having to wait 2 hours without readings.

I’ll try this with my next sensor change. Insert the new one, leave the old one on and active, taking readings. after 2 (or more) hours, stop the old sensor, transfer the transmitter, start up the new sensor right away with no delay.

Cool.

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So glad you found a team you can all work with. I really think your medical team is the most important tool in anyone’s chronic condition management. And it sounds like they have a pretty good grasp of diabetes and children.
I will also agree with many others here, the less the better. I am in a major clinical trail and when I got started my basal rates were discussed. Over the 26 years of pumping, I got some weird rates in there and would just keep adding and changing. I was told most people really only need 1 or 2 different rates. And of course I didn’t believe it, but I so wanted to be in the study, I went with it. And wow, they were right. I have 2 rates on my off days, one during the day and one overnight. And 3 on my work days as I need much less during work. It is so amazing how easy it is to make changes. And it really is more timing of starts of each change and maybe .05 up or down.
So very cool that you feel good about the change and keep an opened mind to change. After 46 years, I thought I knew a lot and the reality is, I still have a lot to learn. We can get pretty comfortable in our ways. As they say, change is good!

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