First, welcome to the land of graphic updates of glucose change. It can be unsettling at first - this is normal. Imagine how an old - fart like me who’ve been T1D for 55+ years felt when I saw what was happening to my sugar levels on the fly? You will get used to it … and your daughter’s control will be far better
First, the blood. Little people can have a lot less fat then adults, so the ideal location for the CGM is somewhere with more rather that less meat. At same time, because of nighttime sleeping patterns, you don’t want it placed where it’s compressed into mattress for long periods of time.
Also, CGM sensors can take up to 24 hrs to seat or “bed in” - don’t be alarmed by readings that are off during this period. Given they are not reading blood glucose but actually interstitial fluid glucose via a resistance algorithm programmed into transmitter. When the actual finger check BG is falling or rising rapidly, the CGM glucose is generally lagged by 20-30 minutes (depending on circumstances).
First things first - I suggest you spend the next month learning and getting comfortable with how long your daughter takes to actually see a blood glucose response to an injection or pump bolus. It can vary, but it should be +/- 60 min for Humalog (youngsters often faster). For comparison, my Humalog takes 90-120 minutes to have any meaningful impact.
Be careful with the size of insulin doses you are administering … use the law of small numbers
Haha, sounds like diabetes AND accurate husband/wife communication. Sometimes those sensors need a day or two to “soak.” You’ll eventually get to a really good place. Although I still have days like that!!! I’m a big fan of the ‘Juicebox’ podcast. I’ve gleaned lots of tips here and there. Facebook and TuD obviously are good too- but I don’t have a ton of time to sit and read. Maybe I’m just an audible learner?! It’s great though- seriously check it out if you haven’t.
The Juicebox Podcast is amazing. I combine that with tons of other research just to get a step up. At some point and time I feel like I’m melting my brain off.
Been a couple of days since you posted about starting with the CGM, so maybe you already have found out by now, but over-calibrating the CGM is actually not a good idea. It’s the instinctive thing to do–I certainly did it when I started (“No, you’re wrong! THIS is the right number!”)–but too much input is worse for the algorithm than resisting the temptation and keep calibrations to a minimum. This is especially true in the first 24 hours of a sensor.
In this case I think I’d have to side with your wife: the more immediate danger is always hypoglycemia. Long-term complications from running high are just that: long-term. DKA is a more near-term concern, but even it takes a while to develop and is quite avoidable if you’re paying reasonable attention, which you clearly are. It doesn’t just come out of the blue and whack you the way a hypo can.
I think one of the hardest things about being a parent of a T1 kid is that every BG fluctuation can feel like a pronouncement of parental inadequacy. Every instinct in your body tells you it’s your job to protect your little kid, and when that job includes exercising manual control over a subtle and complex metabolic system that wasn’t designed to be operated that way, it can just about literally drive you nuts. So you have to exercise some restraint over your own impulse to look at every post-prandial spike as a problem you have to solve right now. You’re aiming to attenuate these fluctuations, but they are going to occur; it’s just a question of not letting them spin out of control and narrowing the bandwidth within which they cycle.
If no one has yet recommended it, please get a copy of Sugar Surfing. It’s not just a how-to, but a way of orienting your expectations to managing this disease in the real world, as opposed to the various guides that all seem to try to boil it down to Take x units per y carbs and voila! BG stays normal!
We were having some issues with Lici on Friday afternoon that looked like maybe we needed to dose her a bit heavier than normal. I called the nurses office around 4:30 pm but they had already gone home. We had discussed this with the doctor at our last visit but my wife wasn’t comfortable with it at first so we tabled the discussion. The EDNO was in favor of lowering our carb ration from 40 to 30:1. Not really an emergency, so we didn’t call the emergency line. So Saturday started out as a normal day. We started with a BG around 80 at breakfast and that’s about when it started going wrong. We corrected for a relatively low carb breakfast but for some reason we saw a spike reserved for pancakes and waffles with pizza for breakfast. After triple checking we counted 30 carbs, no cereal, no milk, it just went crazy. We got her back down to 160 three hours later. Once again we had a light lunch, once again the spike from hell. What is up? we decided to go to the previously discussed 30:1 ratio and would email the nurse on Monday. We ran some errands and surprised the girls with dinner and a movie. We have one of those movie theatres that double as a restaurant. Since it was about a 30 minute drive and we technically didn’t have to correct a high during lunch we went ahead and treated her current high of 310 despite having only eaten lunch 2 hours ago. The Dexcom had given no indication of dips or flattening out in those 2 hours so we figured it would be ok. Plus we had manually checked her BG to dose for the high and it was only 10 off from the Dexcom. If anything went wrong on that 30 minute drive my wife had 2 juice boxes waiting. We arrived at the theatre and had already discussed what to order. Lici wanted corn dog nuggets and fries and we researched it beforehand and was going to be about 65 carbs. Easy day, we would pre-bolus for the carbs before we ordered and even give an extra half unit. Her Dexcom had shown flattening out and even showed a diagonal down arrow form the car bolus… She was about 226 when we got the food. Then things got really bad. She was 400 by the end of the movie and 488 by the time we got into the car. We couldn’t really check for ketones on the drive home but we called the on call Doctor. He was more concerned at the fact that we had given her so much insulin than the fact that she was so high. By the time we got home the CGM and the Glucose meter wouldn’t show how high she was. The glucose meter just had two up arrows. Let me preface this statement by saying her normal daily insulin intake including Lantus is about 5 units. We were at 12 units by 930. Now we have ketones. I call the Doc back and he immediately tells me to throw out her old insulin and give her 3 units. Here’s the kicker he wants her to drink Sprite as well. Holy crap, you gotta be kidding me. You want me to give her more sugar? After hanging up and on the way to the store to buy Sprite I thought about it. He’s giving us a correction for the high while simultaneously covering the Carbs. This does multiple things. 1. brings her down slowly so as not to crash her. 2. gives her liquids to help flush ketones. 3. flushes insulin through her body and get rid of all the old stuff that wasn’t working well. By midnight the Ketones had disappeared. At 330am we finally saw a dip below 400. At 600 am she finally got under 200. by breakfast she was at 120. That was a long night. I was pleasantly surprised when the doctor called us back on Sunday morning to see how she was doing and even more surprised when the school nurse checked in on us (thanks Dexcom Follow). Total units for a 24 hour period 16, total ounces of sprite 24, total hours of sleep 0. I don’t remember much about Sunday besides we all slept. Anybody else experience something similar?
A lot of detail there! One thing that comes across is that you are very much still in the early days of learning to manage this, and these kinds of excursions are to be expected while you’re still getting things dialed in. Every metabolism is different, and toddlers are different from teenagers are different from adults. So the process always starts with having to make some conservative assumptions, see how it goes, then adjust dosages incrementally in light of that information. The biggest concern the medicos always have in this period is to avoid dangerous hypos. So they are very incremental, to an extent that can be frustrating. But it’s a dangerous drug and they have to leave it to us to determine and administer doses, and that (rightly) makes them very cautious while we’re still in the steep part of the learning curve. From your OP I get that you’re about 4-5 weeks into this process, which I think still puts you in that steep part of the curve.
All of which is by way of saying: those post-prandial spikes sound to me like you’re still a ways off from getting her I:C and correction ratios fully dialed in. As you note, your endo is suggesting you adjust her I:C down a bit, and it wouldn’t surprise me if it took a few more tweaks to get it to where her meal boluses are adequate to keep things in check. But endos are always going to approach that point in small steps.
Question: have you done any controlled testing to measure her response to specific carb amounts?
