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.) 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!