When Technology Fails

People often respond to me in disbelief when I tell them this is still extremely hard one year after diagnosis and a full time job even with the Omnipod 5 pump. It’s not just disbelief it’s somehow relayed as though it should be easier so if it’s not the problem must be me or maybe that’s just how I receive it. These are also people who do not have T1D themselves nor do they have a child with T1D.

The uncertainty is what makes this so hard for me and having to make decisions and judgments when you really aren’t sure. I did a Dexcom G6 sensor change on my 3 year old the other day. It bled at application and the flap inside was hanging out but I continued because this has all happened before and everything has been fine. It was also changed right before bed. We go to sleep and her number is steady between 200 and 230 until 4 am which is extremely unusual. Even the times she is 200 at bedtime she will start to drop usually by midnight. I’m super sleep deprived from this disease, it’s like I now have an infant for multiple years instead of one year in terms of sleep. At 4 am I give her a correction with the omnipod then I roll over and go back to sleep. I’m my half awake mine I keep thinking what if she’s not 230? I should finger prick her to make sure that I didn’t just give her insulin when I shouldn’t have. I am so tired that I never wake myself out of that partial sleep state to do the finger prick. Fast forward to 6 am, Dexcom still says 230. Now I wake myself up and I prick her finger and it reads 40. I’m in a complete panic saying to myself that can’t be right. I check again and sure enough it is right. She downs a juice box and her blood sugar starts to rise in what seems like the longest 15 minutes of my life. She is super tired because she’s symptomatic but her numbers are up so I let her keep sleeping. I call Dexcom and they tell me to change the sensor. I didn’t rush to do it because I wanted her to get her sleep (she’s sleep deprived too) and I had just given her a full juice box with what I thought was no active insulin in her body. An hour later she’s back down to 47 because the pod thinks she’s at 230 so it keeps giving her insulin to get her down. I needed to pause insulin on the pod OR stop the sensor. The good thing is it usually only takes me one fail like this to learn for the next time.

This is hard work! So many variables to consider at all times, so many decisions to make, technology sometimes fails (pod and Dexcom) and it’s not always easy to determine.

One question that I have for everyone…if I had not pricked her finger and treated her at 40…she could have seized OR just gone straight into a diabetic coma, is that correct?

If she went into a coma I would have just thought she was sleeping. It’s all so scary.

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Hi @Christine,
I don’t know if this applies in your case, but something to be aware of.

Acetaminophen (Tylenol) can cause false highs with Dexcom.

Taking acetaminophen (paracetamol) containing products (such as Tylenol) while wearing the sensor may falsely raise your sensor glucose readings. The level of inaccuracy depends on the amount of acetaminophen (paracetamol) active in your body.

Reference link:

That is scary!
You’ve probably heard this before, but the Dexcom sensors can sometimes be unreliable in the first 12-24 hours (thought I haven’t personally experienced them being THAT unreliable in the way you describe. For me, they’re more likely to tell me I’m 40 when I’m 200 rather than vice versa.) So, it’s good to double check with fingersticks if anything seems off, particularly in that initial period.
Also, I’m assuming there’s a way to put the Omnipod in manual mode when Dexcom is not reading correctly?
But, really, what a scary miserable time. I’m sorry that happened to you both.

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This happens to me with each and every sensor change on the G6. It will tell me I am at 170, and after a finger stick, I am at 55. I have gotten into the habit of doing a calibration for EVERY G6 sensor for the first 24 hours, and last 24 hours; every few hours until it gets in line with my glucose meter. When it “works” it is fantastic, but when it does not, it can be extremely worrying and can lead to health complications.

The CGM is a great tool, but I still don’t trust it 100%. Calibrate, calibrate, calibrate especially if you have the same issue with them that I do.

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Learning how to take care of T1D can take a long time even with all of the technology available to us nowadays. This won’t be the last time she has a severe low and if you don’t have it already please get a glucagon prescription.

I try not to start a dexcom at night just to give the readings time to settle down and if the readings still aren’t accurate before bed I put my pump into manual mode and wake up and check my BG manually once or twice during the night just to be safe. Since your daughter probably can’t tell you yet when she feels high or low I would check BG manually before giving corrections at night.

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First, I am 36 years old and have had T1D now for almost four years. I just want to say how much I relate to your experience and concerns and how hard it is and all the thoughts and emotions and work surrounding it. And yet you are the parent of a child who has the T1D, so I only imagine that the work you do and concern you have is very much greater. I really admire all the effort you have to put in, and yes, it is really really difficult with all these variables, even when trying our best and paying attention. Things are just unpredictable or weird sometimes, and staying in range is difficult (at least for me, and it seems to be the case for most diabetics).

I have similar experiences to what you describe–just last night I was 178 forty-five minutes before bed. Didn’t do any corrections, b/c I know how sensitive my body is to insulin for whatever reason. I did some exerice (maybe 10 mins.) Right before bed it was 119. Overnight, 2.5 hours later, it was 88 (danger zone for me personally–I ate five carbs. Then woke up a bit too high this morn–154. But better high than low, that’s for sure).

So I am just offering my sympathy and major kudos, and yes, everything you say resonates with managing T1D.

For the coma part–this is indeed scary. It is so much better to err on the side of high than low. You know best based on your experience how to manage things as well as possible, and it’s never going to be perfect. I am not a health professional, and I have never experienced either myself or someone else going into a diabetic coma from being too low (or too high). But I did listen to an episode of the Juicebox Podcast where the host, whose daughter has had T1D since she was born, went into a diabetic coma from hypoglycemia when she was a toddler. What he described were sounds coming from her room like a lot of grunting, and he went in, and she’s shaking and clearly something is wrong. She didn’t just sleep through it. So it’s possible, though I don’t know for sure, that warning signs may occur that are visible in more extreme cases.

I’ve been in the 40s before a couple of times. I was extremely shaky and sweating bad. I could barely coordinate my muscles to get to some sugar. That’s not something I could sleep through and look peacful. (60s, yes; 40s, no). So when it gets extreme, maybe try to be aware of any signs that are visible–shaking, grunting, salivating, sweating (again, I don’t know if such signs are universal or always the case–it would be best to talk about this with your endo).

I wish you well. You’re doing so good, you’re daughter is so lucky!! Keep it up, you’ll get through, even though it’ll always be there to have to deal with. -Becky

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I was diagnosed after going into a coma (high). The high BG coma takes a while and there are plenty of signs along the way that you are in trouble.

Low BG will cause seizures first and trust me nobody in the vicinity will be able to ignore those signs. You won’t appear to be peacefully sleeping. I had a lot of seizures as a kid before CGM’s. But glucagon always worked. Although you can’t use it everyday because it works by having your liver release all of it’s stored glucose so you have to replenish your glucose stores before it can work again. That’s not a very common problem with the technology advances but it used to be a concern.

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I’m not a mom of a diabetic, but I have been dealing with the day in and out drudgery for over 37 years, since I was 21. I got very little day to day assistance. I think that you are totally amazing, and unfortunately, it doesn’t get a lot easier, because people change biochemically ALL the time. (Yup! … sigh! … )

I hope this helps, or at least tells you what happens with an extreme low.

Neurons (your entire nervous system, including your brain of course) do not actually need insulin to pull in glucose for fuel. Most of your cells need insulin, but not your neurons. BUT, your neurons cannot function without that sugar. That’s why you have seizures, or any number of other problems, when blood sugar is very low.

Sorry if that freaks you out. I know that it isn’t easy, but it’s generally not a good idea to do sensor changes right before bed. I’ve been diabetic for +37 years, and I have had a cgm for about 8 years. I can count on one hand the number of new sensors that I have not had to calibrate.

It’s good to check your blood sugar with a finger stick when your sensor is brand new (even right before a sensor change) so you know where you are in comparison to what the sensor says. (Yes, I know what the commercials say. But they also cover their butts by pointing out that you should check your blood sugar if their numbers don’t match symptoms.)

However, calibration of your sensor before its at least an hour old, or even 2 hours old, can confuse its tiny brain. Personally, if I’m not sure about my sensor, I turn off my pump’s (Tandem x2) automatic adjustments (control IQ), so it isn’t treating highs or lows that don’t exist.

Again, I hope that this helps, and doesn’t make you feel worse.:woman_shrugging:

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