A frightening experience at sleepaway camp

Wow Michel, that is indeed a scary incident. Some random thoughts about things you can do.

1 - buy a metal bowl, put some change in it, put the phone or dexcom reciever in the bowl at night, I promise you it will wake the dead. We don’t use it all the time, but when my wife and I need some sleep, we use this contraption to ensure our son wakes up and treats himself.

2 - aim for a higher target at sleepaway camp. When our son went to diabetes camp, they fed them carbs 6 times per day, and only dosed for those carbs 3 times per day. While this isn’t good for longterm care, it certainly ensures no one goes low. On the flip side, it was really hard to gain control back after this treatment scheme. So there is that as well.

It is a little troubling that the camp director wasn’t on the phone with you or your wife as he was working through the situation, I would definately try to correct that in the future. Scary stuff indeed. Sorry for the random nature of my post.

5 Likes

That does sound really scary—glad everything worked out ok!!

I went to overnight camp for many years as a T1 teenager without a Dex and survived, and in thinking about it, I think this is key: My A1c’s and control was never as tight as your son’s (I honestly don’t remember what my A1c was, but I’m guessing our target was more like 7), which probably had its drawbacks, but it really wasn’t possible with the tech (or lack thereof) back then. By running higher on the whole though, I suspect most of us who were diabetic back then had both stronger hypo symptoms at higher levels and were less likely to run low. While I wouldn’t recommend changing your strategy in general, since tight control is great, no reason not to temporarily aim for a significantly higher overnight target (say 150 overnight for a few weeks even won’t likely cause major longterm damage from the highs and may prevent something scary from happening).

Maybe the issue is less about being UNLIMITED and more about striking a balance between tight control and living your life? Sort of like how as an adult, I try to stick to low(er) carb at home, but when I’m on vacation I say f*** it and eat more of what I want and do my best with it, knowing it’s temporary, and that I need a break sometimes.

2 Likes

@Michel, glad all is well!

1 Like

That is very scary. Is he normally very difficult to awaken?

At home I have my watch vibrating, my Android phone screeching, my Android tablet ringing and my wife’s iPad dinging and it only wakes her up when I’m very low. She will have to get me up in those situations.

I’m happy to hear it all turned out ok.

1 Like

Just curious - why not the Dexcom receiver also? Would not your smartphone be a (potential) single point of failure?

Sorry to hear about this experience, but I know you’ll find some way to work through this so that @Kaelan can stay UNLIMITED. The change in the metal bowl really sounds like a fantastic idea and I’m going to try that myself, because, lately, Erin and I have NOT been hearing Liam’s alarms! Extra “noise” will help to some extent, but someone BESIDES KAELAN should be (and I presume was) overseeing his BG’s - especially during the night. Someone, besides the Camp Director if he/she is going to be unreachable, has to be reachable. They don’t have a 24 hour “hotline” where families can get through for emergencies? If not, they should consider this…families may need to reach out to their kids anytime of the day for emergencies.

Glad this worked out, and he’s OK.

2 Likes

@Thomas xDrip+ and the Dexcom receiver don’t play nicely together, so my receiver is not in service.

1 Like

Yeah - I forgot you were running the xdrip and had read of the problems with both the xdrip and receiver. Makes sense.

1 Like

I feel like this is a whole separate (and tough!) topic – how to ensure you wake up to alarms when needed, and not when not. The other night my husband was on the night shift and his alarm was going off. I shook him and shook him and shook him – he had a whole conversation with me which made almost sense but not quite – for isntance he kept saying he tested Samson and he was 108, but that was over an hour earlier, and now he was 88 on Dexcom. If I hadn’t been fully up and looking at his numbers I would have believed him. But ultimately I knew he was wrong and even though I tried shaking him, talking to him, turning on the lights, he WOULD NOT WAKE UP! I went and checked and treated Samson and took over for the night, because it really freaked me out. The next morning he had no recollection of that whole experience. Weirdly, he had not actually been sleep-deprived the night before or anything.

How on Earth do you deal with these situations?

And the other issue – it’s great that we are each other’s backup, but that means if one person is on shift and tired and lets alarms go off all night, the other person is also tired the next day – meaning they may not wake up to alarms the next night. Ugh, such a rough problem.

We don’t have shifts! You are LUCKY!!! I do all work during the night UNLESS, in the off chance, Erin happens to be awake for whatever reason. When I leave for work in the mornings, Erin takes over…but I have Share open on my way into work, and while at work, and make calls to her when I see BG’s coming to dangerous territories. Most of the time she’s aware and has already dealt with it, but sometimes not (she may be sleeping and our other sons may be the “BG Monitors”…which doesn’t work well because they’re kids and don’t realize the severity of the situation - so their games take priority.)

We’ve been running into issues ourselves at nights because, for whatever reason, I’m entering a phase in my life where I sleep more than usual and I sleep DEEPLY…this isn’t like me. I have always been able to hear a pin drop, but lately, I’ve been so deep in sleep/dreams that I don’t hear alarms.

And there are other mistakes I’m making…I wake up and see his BG’s at 89 level, dropping by 2’s over the past few hours and I think to myself, “I’ll just go back to sleep and wake up when he’s closer to 70”. But then I go back to sleep (like last night), and not hear any alarms until he’s 61…so then it’s too late. :frowning: I gave him a tablet, but he ended up dropping to 49 before he went back up. Also, we’ve noticed that tablets don’t keep him up…they take him up, but then he drops again. Perhaps a basal issue, but basal rates during the nights, for us, are SO difficult to manage due to his size. Removing basal results in highs. .05/hr results in highs some nights and lows some nights. .10 has the same effect. We’re doing .05 and .10 during the nights now based on the hours he’s trending high and low over the past weeks, but every night is really so different for us. Some nights we can have .10 on all night and he’ll ride high while other nights we can have .05 on OR NOTHING on, and he’s riding low. The nighttime basal rates, for us, are the most tricky thing to us that we are always tweaking more than anything else.

For the heavy sleepers…

I posted this a while back. It’s a device that turns on the outlet plug when an alarm triggers it.

So even if the Dexcom alarm does not wake you, it will turn on the outlet, and whatever is plugged into it. A radio cranked up? A vacuum cleaner? A light?

Whatever would wake you up, plug it into this outlet. And then put the Dexcom next to it.
wifi-alarm-for-night-monitoring

yeah I think we need this, but the issue is I’m not sure what will wake my husband up in these situations. The scary part is that he seems to be awake and yet is not.

We do have a smart siren for when Samson gets to the dangerous, urgent low territory and that works well for me; I dont’ sleep through it even though my husband sometimes does. But we’re trying to reduce his time spent in the low, <70 but more than 55 range, and that requires waking up when he drops below 90 or 80… but also not waking up the other person sleeping in the room…

We’re thinking we may need to change our shifts… because it seems like on average one of us is more naturally a light sleeper at one time versus another. Right now it’s nights (9pm -6am) versus mornings (6am - 9am dropoff). But maybe we need to shift the shifts, so to speak, so that one of us goes to sleep at 8pm and wakes up at 2 or 3 am and vice versa.

31 posts were split to a new topic: Tresiba for Everyone?

So as to avoid hijacking this thread from @Michel, I’ve moved the Tresiba discussions (great discussions!) to the Tresiba thread.

2 Likes

It sounds like most everyone posting in this thread is using a pump and CGM. I don’t, but if I did, I’m pretty sure I would be using the OpenAPS. Or the Minimed 670G if you don’t want to roll your own. Those systems do their best work in overnight management. Has anyone discussing here tried one or both of those?

We recently changed pumps and very specifically did not choose Medtronic as I firmly believe Dexcom has the best CGM product and am not willing to switch to a different CGM provider.

1 Like

We use Dexcom and a Tandem pump, and are anxiously awaiting the set of releases that will allow us to use this technology.

We do have one or two people using OpenAPS, and while they learning curve is steep, I think they have been successful at improving their night time care.

1 Like

We use MDI, Lantus/ Novolog.

Pic of the low tech solution, that makes the high tech solution work for a teenager. Note: This works because the phone or receiver vibrates, as well as alarms. Works like a charm.

image

For those of you that are protective of my test hamster, worried that I forced a low just to get a better picture, I applaud you. But be assured, I just took advantage of a fortunate coincidence.

6 Likes

I am TOTALLY trying this. You guys are amazing with your creativity. :slight_smile:

I swear, I think collectively FUD should write a book. lol. Liam is pointing at the screen as I am typing this message, btw and pointing at the receiver. He said “That’s a blood drop, papa. It needs to cawibwate (callibrate…but he said cawibwate”)

6 Likes