A frightening experience at sleepaway camp

Parenting a D-Child Teen
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Last night was rather frightening (mostly for me, not so much for my son).

Since last weekend, my son has been going to a coding sleep-away camp (for glucose-normals) in another town about 1 hour 15 minutes from home. Last year, when he went, he was still in honeymoon, and had not entered puberty yet – times were easy. This year, we have a much harder time with his BG, and we prepared carefully for camp: we discussed alarm strategy, basal plans, and adjusted his phone ring time with his cellular provider so that it would be as long as possible before going to voice mail.

Of course, the day he left for camp, his BG starting going everywhere – that was expected, due to different routines, different foods, no exercise and wild sleeping schedules. The nights were not good either, but we were able to make due by tolerating higher levels for highs at night. A couple of times I called him around 3-4am because he was approaching 180 and had not woken up yet. His BG levels were not great (lots of highs and lots of lows) but we had expected that.

Last night he went to bed really late again, as he has for the past 5 days, so he was quite tired. In the middle of the night he started going low. Once he had passed 65 I started calling him but could not wake him. I called non-stop, every 20 seconds (the ring duration), for 15 to 20 minutes , at which time he was in the low 50s. So I woke my wife up, asked her to alternatively call the camp director and my son, and jumped in my car, driving to camp (1 hour and 15 minutes away).

As I was driving I was thinking through my options. Last year, I had tried to get a hold of the camp director a couple of times, but had never been able to get through in a timely manner (no less than two hours). I had no expectation my wife would get through to him. I knew their dorm was in an access-controlled building, so I could not walk in. I was hesitantly vacillating between ambulance, police or firemen while driving in the night at 95 miles per hour.

Once he hit the lower 40s (after another 10 minutes) I got ready to call. Right then my wife texted she has just gotten a hold of the camp director, who told her he would wake my son up. I kept on looking at the CGM - he hit the LOW level and stuck there for the next 20 minutes. I could not understand why we were not getting news from the camp director or my son. Finally, as I was again ready to call 911, we got a text from my son telling us he had reached 100.

It turned out that the camp director could not wake him up for a good ten minutes – he just would not wake up. Then, once up, he took a bunch of carbs and quickly went up, then texted us. His CGM remained LOW for about 45 minutes, as he had trouble keeping his BG up. I ended up picking him up a few minutes later and bringing him home for the rest of the night. Not surprisingly, he was quite slow-witted throughout the episode.

For the last couple of days of camp, I am shuttling him back and forth, morning and evening.

The lesson of this experience, for me, is that a teenager can be in a physical state where no alarm will wake them up, and that 24-hour access to camp staff in summer camps for teenagers appears necessary. I am still working through the events of last night, trying to figure out how we could deal with it differently next time.

What is worse than this bad experience is that it is the first time we have not been able to be UNLIMITED since diagnosis. This is a very troubling thought. I really believed we would always be able to find a way to do whatever another glucose-normal kid would do. I am disturbed and unsettled that glucose-normal sleepaway camp is defeating us right now.

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That is terrifying. Pretty much my worst nightmare. I think it could be beneficial to have someone on staff have access to nightscout or something for serious lows. If it were me, I would make certain that I had instant access to multiple people directly. If he has an iPhone (or possibly Android–not verified), you could even do an iCloud “I lost my phone” maneuver where it will cause the phone to alarm–even it is set to silent. Maybe it would then wake up someone else close by.

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Looking across my extended relatives, it is the unusual person who has no issue which needs to be compensated for. In fact, T1 is less limiting than some other conditions (which are present in our extended family).

Based on our experience, an alarm (at night) is not sufficient for the T1 themselves. A second non-impaired (meaning no sleep conditions, no alcohol, no drugs, no sleep deprived, etc…) person is required to be able to wake on an audible alarm.

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There are some ways you can set your omnipod up for situations where he is away. Some safety profiles.

Bascially you would have the basal profile be at the minimum for a certain time at night.

  • If he is ok (meaning - “awake”), he can turn on a temp basal to cover this time.
  • If he is not ok (meaning - “not awake” you can’t wake him) he would not turn the basal back on. By default, it would stay off.

That at least removes insulin from the picture and helps him recover without needing food.

We can talk through this sometime if you would like.

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So scary!!! I am glad that everything worked out in the end, though what a hair-raising experience.

I don’t think this is an absolute “no go” situation – I think the issue is that it seems like you’re relying on Kaelen to do all the care, when really you needed to loop in the camp directors and camp counselors, and maybe even some of his friends, agree upon rules for certain key emergency situations and make sure they were actually using them. Not all camps will agree to this, of course, but coding camps are not so rare that this is the only one. In fact, it may be that there is a way for Kaelen to be unlimited at a sleepaway camp that is even farther but has more robust safety measures.

Another thing to consider is whether you and Kaelen set up a buddy system in advance. So his camp director needs to be willing to wake him up, but there should also be a camp counselor, another camper, who is a light sleeper who will agree to wake him up if he doesn’t wake to his alarms.

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So the other thing I’d add is that WE, I think, have erred too much on the side of trying to get Samson to do things but just assuming that we would take care of all the D-stuff. We think it will throw up fewer obstacles for Samson doing things (like daycare) and be easier on other caregivers if we minimize their responsibility. Plus it feels easier and more convenient – less training, less gentle reminders, fewer explanations. Fewer points where you’re highlighting that your kid has this extra issue to deal with. But in the end, anytime our kiddos are out of our eyesight they ARE in someone else’s hands.

I’m slowly coming around to realizing this can be a double-edged sword. For a long time we’ve been trying to manage Samson’s care with the teachers minimally trained, and we used all sorts of hacks – different basal rates that could compensate for remotely bolusing on a delay, texting teachers when they missed lows, relying on openAPS to cover all meals, having him skip snack, etc. In the last few weeks we had a discussion with the teachers, who complained we were contacting them too much for treatments. So then I had to explain that the problem was no teachers were trained, and were not treating lows, etc., and that we’d be happy to stop texting if he was treated. Insisting the teachers take greater responsibility for his care has resulted in better treatment for him and also I think the teachers feel better too – because responding and reacting is more stressful, unpredictable and time consuming for them than agreeing to take on the care themselves. My own bias is always the “we’ll take care of it” approach but sometimes people will surprise you and be willing to take more on, and it does help.

Kaelen’s situation is different because he really can do most of his care on his own, with little input from the adults around him who are not family. But he could probably still use some help from others in charge.

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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.

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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.

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@Michel, glad all is well!

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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.

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

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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.

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

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

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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.

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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.

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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

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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.

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

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

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