Discussion in 'Parents of Children with Type 1' started by ecs1516, Jul 31, 2014.
Just curious if any high school or college age are using the CGM in a Cloud with their Dexcom.
Not yet. We're wanting to compare it with Dexcom Share, but one of the two is definitely on my teen's wish list. She still doesn't wake to lows or alarms, and she'd like to go to conferences, etc. without involving others if we can.
I had started ordering some of the stuff a couple of months ago, but my dd was not too happy with the idea. She considers it too much of an invasion of privacy & after some thought & discussion, I agreed. Would've been great to have when we first started Dex though.
Mine starts college in the fall but she'll be living at home. She won't even wear the dexcom at this point, I'm hoping that changes soon. She wants to be in charge of her own care, so for now to her it's as stated above a huge invasion of privacy to her. So I'll just deal for now.
When she was considering college away we did discuss the share (cloud wasn't out then) and she may have been willing to use it at night but with someone other than me, meaning a friend or roommate getting the alerts.
I think this is a tricky time, and a tricky question to answer. What does your son want to happen? My son would be appalled by the idea of CGM in the clouds. He's an adult and it's time for him to fly with his life, and that includes diabetes. Having mom at home obsessing over his numbers would not be healthy for either one of us. But that's us, and your son may welcome the help.
Trust me, I KNOW your fears and I share them. But I've had to let go of his management and trust him. I wonder if you could have some compromise where you watched his numbers at night only...but then...what would you do if he were low, how would you wake him? I guess my question would be having the information wouldn't mean you could DO anything, so what's your plan in that aspect?
Sending him off to college was difficult...but he's done wonderfully and I've really enjoyed seeing him mature. I'm hoping the same will be true for your son. (and I maintain my opinion that those diagnosed early in life have a harder time taking over management, and I consider myself fortunate in that area..there's never a GOOD time to be diagnosed but I think letting go is easier on those of us diagnosed later in life).
My son wears his CGM sporadically. I wish he'd wear it more and I state my opinion when I can. But it's his ultimate decision and I think as he gets older he will see the value of it more than he does now.
The older you get the more you start to explore and want to use anything that helps. When you are working in a corporate job the first time you need to exit a meeting to tend to a low number is when you think a CGMS and/or a pump would have been fantastic. When your BG is plummeting in a meeting you do not comprehend half of what is going on. A few experiences of that or being low going into a manual labor job and pretty quickly you start looking for help. The important driving forces are, how relatively easy the diabetes is to manage, and make no mistake some have an easier time than others, how tight the individual wants their control, how well they recognize if they are in good, medium or poor control and what they think the consequences of that control might be. It is tough, a good Endo is key, and all the ground work you incredible parents on this site have shared with your kiddo will for most of these kids show up sometime in their 20s or 30s,(maybe 40s if you have one of those really stubborn kids) just like most of parenting advice
high school/college age kids should be able to set this up for themselves who says that someone has to be monitoring it besides the person with T1. i am currently wearing the Pebble and my oldest is 140 going straight with a simple glance at my wrist. I think this couls be very beneficial for a T1 to be able to just take 1/2 a second to see what their number is doing if they need , no need to take out the phone/receiver/ or meter.
Personally, as a type one diabetic in college I would never agree to use a dexcom (or similar device) where my parents could check what it said at any time. Firstly because if your child is going away to school it is time for them to learn how to manage this disease on their own (as well as learning to call you when they need help). Secondly because when you are at school you don't talk to your family everyday, you are too busy, and so are they. So if my mom were able to wake up at four in the morning and see that my bg was over 400, she would have no context for the information. Maybe I was on a midnight Mcdonalds run and had ice cream, maybe I have a really big test the next day and I am just stressed, or I fell down some stairs and hurt my knee and it sky rocketed my bg, or I just had a bad set. In any of those situations, I would not want a call from my mother, I would not want to have to explain to her that I ate something that was super unhealthy cause I wanted to be a college student and have fun with my friends. I know that you are all thinking about night time lows, and worrying that your kids will not hear their alarms, but that is a problem that you will have to solve another way. I survived a year at college with a roommate who doesn't hear dex alarms, not waking up when I go low. I figured out ways to make the dex alarms louder, or made sure I was above a certain number when I went to sleep.
Don't get me wrong, being a T1D in college is hard. But I am so proud of myself because I made it, and I did well. Now I know that one day I can live alone, get married, have kids, and I won't have to live with my parents for the rest of my life.
Just my 2cents
Jess has some wonderful points. College is a time to let them fly. Our conversations in using the share were based on the idea that someone, a room mate or friend, would get alerts it wouldn't be me. I also agree with Nan, having been diagnosed at 13 we spent a good chunk of time without T1, and I know she can do this on her own. In fact she has been all summer even though she's at home. Oh sure I'll steal a look at the meter here and there if given the chance but that's about it.
mmgirls point of having a pebble and just being able to glance and see the readings is great. But for my kid she doesn't want to know what it is all the time. She can glance at the receiver if she wants and sometimes when she was having an issue in school she'd just put it out on the desk and monitor. But the rest of the time she doesn't want to be looking at her number 24/7.
Jess, thank you for your post! My son is only 7 so I don't have an opinion on CGM in the Cloud in college, but I definitely love reading about young people made it to the "other side" of diabetes and adolescence and are doing well. Sounds like you have a good head on your shoulders!
My son really likes the idea of the Pebble watch to see if he is low without pulling out the Dexcom. He even tries to read it through the Spibelt without taking it out. So this new technology opens new ways for him to monitor. He also wonders if the watch would vibrate to help him wake from lows. He currently cannot hear any Dexcom alarms(on bowl, in bowl tried it all). Sleeps right through lows like 30s etc. He is currently exploring new ways he can be own his own and not live with his parents forever so any new technology is gladly appreciated. He has lived with type 1 for over 14 years and not sure if that has anything to do with not feeling lows at night.
He may need to reset his low threshold by running a bit higher for a few weeks. This is a common issue for T1s. Have hime talk to his Endo if he has a good one. You do become immune to the feelings. Plus often the more gradual the low the less you feel it, your body adjusts as you go down, those rapid drops are hard to ignore, this is one reason sleep is an issue, tends to be more gradual drops. I am married and sleep with someone who hears my devices and feels my increased physical movements and sweating as I ma going or staying low, he is my back up, I also sleep through the noises, I have the Medtronic Pump/Enlite CGMS which will shut off if no response but I only use when I am by myself, I also have the feature turned on where if I do not touch the pump for so many hours it shuts off. See if he can come up with a combo of ideas that might work for him. He may just need to run a bit higher than ideal at night till he has some one to help him hear the alarms. It is a real issue, my Endo is pretty adamant that I use the Medtronic for the shut off feature alone. Ali
My 15 year old has trouble waking to the Dex alarms as well. When he went to NY a few weeks ago we put the iSeismometer app on his phone. When his Dex vibrated, it would go off. It doesn't shut off until you shut it off. And it's LOUD. :smile: This app is for the iphone, but I'm sure there are others out there for other phones. https://itunes.apple.com/us/app/iseismometer/id304190739?mt=8
I sleep thru Dexcom alarms but am waking for Pebble vibration alarms! In its current form I think the Pebble could be annoying to the person with T1D, it alarms for everything!. Yes I know I just walked out of the room and down the hall, and yes I know I am back in range! If I could get a version that sis not alarm every minute it was out of range I would consider having my dd use it. But I will continue to use the Pebble as is, because I am not at all annoyed with the constant alerts because I am being made aware always instead of not hearing alarms during ??? or Hourglass or sensor stopped, because I ignored too much.
Did you have to play around with the sensitivity on this app? We downloaded it and tested it out, but we couldn't get the alarm to go off every time Dex vibrated. With the default settings, the alarm never triggered. When we increased the sensitivity, it would sometimes go off, but not always. So we deleted the app. I'd love to give it a second try though if anyone has ideas on what we were doing wrong.
Is your lock screen turned off? We didn't have to play around with the sensitivity. We just made sure the lock screen was turned off and the vibrate was on. He put the Dex on top of the phone and it seemed to work without any problems.
Ah, that makes sense. Unfortunately, it won't work for us then. We are required to lock down our phones by our employers, and I wouldn't want to mess with turning the security off and on all the time.
I will have him try this . Great idea. Question , I assume you have to have it where the screen will not shut off. Also because it being 'on' all night I would think you will have to keep it plugged in all night so the battery doesn't die on iPhone? Does he put the Dex right on top of the iPhone?
I saw this blog recently about an adult who was/is using CGM in the Cloud. Personally, I don't understand why an adult on a DexCom would not just look at the receiver, but I do not have diabetes, do not need to wear multiple devices. As a non techie, it seems like a lot of work for oneself. If it were for monitoring a child, that's another story. You do what you need to do.
Yes, he keeps the phone plugged in all night and puts the Dex right on top of his iPhone. It didn't just wake him up but also his grandmother in her bedroom down the hall, lol! I had so much more peace of mind that he was able to hear the alarms without me being there.
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