Thinking out-loud…

But hey, I ain’t no Ed Sheeran…

Anyway… I want tighter control. V’s last A1C of 7.9 (avg. BG of 180 over 3 months) at the end of January was a little slap in the face, after holding steady at 7.0 (avg.  BG of 155 over 3 months) for 6 months. I expected that much, as we’ve been dealing with lots of highs. V’s Endo thought that carb counting was off on our end. It’s partially true – I think carb counting was mostly OK at home but went to hell in a hand basket when kids spent a lot of time at their grandparents’ over the month-long break. Holiday eating brought more SWAG than usual, so I can see where we could have been miscalculating carbs more frequently.

Some other things were not in our control. There was a lot of sickness in December and January. Even mild crud tends to send V’s BG into stratosphere, and while we did everything we could to keep it in a good range it was often a losing battle. There may have been a growth spurt there, too.

What I have not shared with the Endo, but thought about quite a bit, is that we also got more lax with higher BG. We’ve become more tolerant of it, less focused on bringing it into a better range, taking longer time waiting to see if it would come down on its own. The combination of all of the above factors resulted in a rather big jump in A1C. Now, don’t get me wrong, 7.9 is not terrible. But it’s not great and we knew we could do better.

Both V and I walked out of that last appointment determined to turn things around. She wanted tighter control, too. We made some changes right away. We changed CGM high alert setting to 230 down from 300. I got on top of pre-blousing for breakfast.  We started paying closer attention to high BG and being more aggressive in correcting it right away.

Our efforts are paying off. Every day I obsessively check the stats and the trends in the PDM. So far the average BG for 90 days has been steadily declining, and V is on track to get a lot closer to 7.0 again. But it did not come easy. There have been more lows, some unexplainable, others direct results of impatience and rage bolusing. Good A1C due to the lows dragging the average down is not a good idea, that’s not what we are shooting for. So we are figuring out how to stay in a better range without doing unhealthy things. Or plain stupid things. We’ve been more diligent about carb counting and carb intake. V has been back to her sports, which helps to manage her BG. My husband and I have been waking up more at night to keep an eye on and correct BG.

V and I got talking about the progress and the process the other day, and I mentioned to her that if she really wanted to get BG under 7.0, we’d have to take a close look at her diet and reduce the number of carbs. Her reaction was lukewarm and it’s understandable. I don’t expect her to get onboard now and I’m not going to push it. If it were me I know I’d want to try a low(er) carb diet. But how much can I expect my 9-year-old to give up for better BG? How much of a tighter control does SHE want? It’s her life, it’s her body, it’s her diabetes (as she often points out to me). For me, a tighter control is almost like a fun challenge, a game. I’ll be honest – a good A1C bring some bragging rights that I rather enjoy. But for V, the daily headache of diabetes management sometimes overshadows all the benefits of a good A1C. What is good enough? How hard is she already working to get to back to 7.0 and is it worth it to even think about a lower A1C? How much would it push her toward burnout and diminishing returns when it comes to diabetes control? Every day I have to ask myself: who am I doing it for? And, is it worth it?

Image credit: Melissa Lee at sweetlyvoiced.com

Murphy never sleeps

How is it that things happen all at once and at the most inopportune times? First, Dexcom CGM sensor started giving up the ghost a few days ago after a few ??? messages, inaccurate readings and a couple of false lows around 5-6 AM. I do NOT like it when Dexcom is yelling at us that V is under 75 when she is actually 96. Especially when it’s at the butt crack of dawn. Then, after  nearly a week of dealing with more lows than highs, the morning CGM sensor died V tested over 300 before lunchtime, completely out of the blue. And of course we did not have time to change the CGM sensor that morning, so we could not tell which way the wind was blowing because while the sensor was still attached to V it was no use to us. Except it spontaneously resurrected itself a bit later, only to sing us “You are high” tune. Whatever, we knew it already. Rage bolusing and increasing temp basal by 60-70% only helped to bring BG into mid-200’s.

To add insult to injury, the day the sensor died was the day of eating ALL the carbs. We started with a Birthday party for V’s friend late morning, proceeding to a tea party at her piano teacher’s studio in the afternoon, and finished up with a Birthday dinner for V’s grandmother. We stayed reasonable, but you can only stay reasonable to a point when you are at parties. Carbs were eaten; BG refused to budge. After waking up to bolus at 2 AM, we finally beat BG into submission by the following morning. However, things are still not quite where we want them to be.

Ahh, diabeetus…

diabetes2

T1D on the run

It’s been a while since V and I went on a run together. Tonight an opportunity spontaneously presented itself. Good thing I have my fuel belt handy, so I quickly pack her diabetes essentials: shot blocks and gel for fast acting sugar, CGM, meter (what if CGM stops working?), and glucagon (just in case, I simply cannot bring myself to leave it behind.) V’s pump remote control is a little bulky, so I decide to leave it in the car and not put it in the fuel belt. After all, chances of V needing insulin on the run are slim to none.

I glance at the CGM before we leave the house. V is around 150. “Not bad but a little low before the run, have a few pretzels” – I instruct her. She happily obliges. I glance at the CGM once more before we get going and she is holding steady at around 140. It is a bit low before running but I decide that we will play it by ear and see what happens. After all, I brought plenty of fast acting sugar.

Jog, jog, jog… We are having a grand time. I keep glancing at CGM. V’s BG is lower but steady. I have her eat one shot block. Jog, jog, jog… V is feeling great but her BG continues to read a little lower still. I have her eat one more shot block. Jog, jog, jog… About 1.5 miles in CGM says that BG is 116 and now trending decidedly down. I ask V to eat one more shot block and she tells me that she really does not like the taste of it anymore. “Are you feeling OK? Are you feeling low?” She insists that she is feeling fine. OK, I pull out the gel and have her eat it. The last thing we need is a crash, and we have to go another 1.5 miles to get back to the car. She will burn it off for sure. We stop and V happily eats her gel. We carry on.

A brief pit stop to refuel on sugar

A brief pit stop to refuel on sugar

Jog, jog, jog… And then it hits me. OMG WHY DID I NOT REDUCE HER TEMP BASAL BEFORE WE STARTED??? I am feeling so spectacularly stupid. What would I do if V were 150 before gymnastics? Lower temp basal. What would I do if V were 150 before BMX? Lower temp basal, of course. Why it did not enter my mind to do so before our 3-mile run is completely beyond me. And now there is nothing I can do about it, as the remote is in the car and the car is 1.5 miles away.

Jog, jog, jog… V is now below 100 and still trending down. I remind myself that CGM takes a little while to catch up, so she is probably OK. And we have more shot blocks that she will eat if she has to, like it or now.

Jog, jog, jog… V is getting pretty tired but going strong. I glance at CGM again and to my relief see that she’s now stable at 90. We successfully prevented a low! We finish 3 miles strong and happy, and with great BG to boot… Or so I think?

We get home and I have V test and bolus for dinner. I am expecting a great number and CGM reading is in the neighborhood of 120. I’m feeling smug and proud that we nailed her T1D management on a run. She tests: 212. WHAT? How is it possible? She just ran 3 miles for crying out loud! We had a near low!  I ask her to re-test and she gets the same result. CGM is now showing 136 with two arrows up, indicating a fast and furious trend upwards. Crap. I am now realizing that I royally over-treated her on the run. Between the shot blocks and the gel she ingested around 40 g. of fast-actng sugar and is now about to sky-rocket.

It’s time for damage control. I increase V’s temp basal rate by 70% (!) and she boluses for her meal. About one hour later she is nearly 300, but at that point I know we need to wait it out as she already has a lot of insulin onboard. She gets back into low 200s by bedtime. I extend her increased basal rate for another couple of hours and add another bolus. She is finally on her way to a good range.

And that, my friends, is how NOT to manage diabetes on a run.