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"CGM in the Cloud" - How many are there of us here?

Discussion in 'Parents of Children with Type 1' started by mmgirls, Jul 21, 2014.

  1. mamattorney

    mamattorney Approved members

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    You know, I supported your cautionary tale the first time you said it, but honestly enough is enough. You make it sound like parents are endangering their children by using this system or that the only reason they are doing it is to hear the (admitted much better than Dexcom) alarms at night and I can't agree with that.

    Let me guess - you can put the receiver right by your bedside and see your son's numbers any time you want, right?

    Well, I can't. My daughter's bedroom is a floor below mine and across the house and it just won't reach. I use it at night to see the numbers and love the alarms and I'm not in the slightest bit concerned about my child's safety while doing it. Geez - even people aren't failsafe; some people sleep through the dexcom alarms when the receiver is right next to them.

    We had the dexcom long before this so we concocted a way to hear the alarms in our room before this came out and we still have that system in place. But I could never SEE the number and that's what makes this system so beneficial for me.

    There's a huge difference at 2:00 a.m. when you hear the "dropping" alarm and have no idea without going down a flight of stairs whether she dropped from 160 to 148 (no big deal) or from 90 - 82 (concerning) or whether a low alarm means she has just gone from 90 to 75 and is dropping fast vs. 81 to 80 and might pop back up again in five minutes. Prior to May, if I woke up on my own I would have no idea what was happening, so my choices were to go back to sleep without knowing or to head down the stairs and check and then back up again. Now, I can glance at the numbers from my bed to see what's happening and whether I should try to nip something in the bud before it alarms. These simple things that are available to people who can view the receiver in their rooms were not an option for me. It's like anything else - you don't appreciate the little things unless they aren't available to you.

    That's why, even if I only use it at night, I'm fine with the money I paid for the system. And it is an expense - I don't readily toss $120+ around without thinking twice.
     
  2. Christopher

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    Welcome to the forum, I see this is your very first post. I think your message may be better recieved without the hyperbole. But I get what you are saying.


    Yeah, that pesky FDA, always wanting to keep people safe and stuff.
     
    Last edited: Jul 25, 2014
  3. StacyMM

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    Yeah, that.

    Right now my son is with a friend and his friend's family. I know that's he's 154 and steady. I haven't had to call him, text him, worry. The family doesn't have to worry and wonder if he is low (which is the fear we run into with friends' families.) He carries a bag and his diabetes gets to fall into the background because he knows I've got his back. Which basically means that I have his page on my computer monitor and I can glance at it whenever I want to. If the connection goes down, I'll call and let him know. In the meantime, he'll hear high and low alarms, as well.

    We don't use it 24x7 but it's so great to have it when we want it.
     
  4. jenm999

    jenm999 Approved members

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    This is it in a nutshell for us. Well said.
     
  5. flinkity

    flinkity New Member

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    According to Merriam Webster dictionary, hyperbole is : language that describes something as better or worse than it really is.

    I'm assuming you are suggesting that I'm describing something as worse than it really is, not better. And frankly, I don't agree with that. Since diagnosis, my primary goal has been to keep my daughter alive. When you pick your child up from school and her bg is 38, I think that's cause for concern. When she's in such a daze sitting in the cafeteria waiting to be picked up from school that she doesn't hear them call her name. So, they have me pull WAY up in the carpool line & then they have her walk all the way to my car by herself in the 3rd grade with her 38 bg. Not to mention always worrying she'll die in the night--something that is better now that I have a cgm & even more so with CGM in the Cloud. Nevertheless, all legitimate concerns and hardly exaggerated.

    Rather than be critical of other's choice of language, if I were you, I'd look inward toward your own language issues or at least master the use of spellchecker.
     
  6. Darryl

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    We are on board and I LOVE IT! Leah has it on her iPhone too which is great because she looks at the iPhone more often than the CGM :wink: It's still a new system but the developers have done an awesome job getting it underway. It's open source code and I am already trying out some ideas that I've wanted to suggest to Dexcom over the years. We don't use it all the time and don't rely on it at night because the alarms are not fully implemented, but it's really good peace of mind to be able to check on the BG from wherever I am.

    Screenshot_2014-07-22-20-41-07.jpg Screenshot_2014-07-25-23-29-29.jpg 10351820_10204261066428054_3118246702690690947_n.jpg
     
  7. DavidN

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    Welcome to the board.


    Agree. If others don't feel the same way, good for them. I envy them. But you, and many others (including me) do.
     
  8. Darryl

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    I wish I had this when my dd was newly dx'd in the 3rd grade, it also would have helped prevent many potentially dangerous situations like the ones you described in the couple of years before she was able to self-treat. Even now as a teenager, it's hard to know if she is always checking her CGM when away from home, like during a class trip or sleepover. This technology gives me tremendous peace of mind that I can know if she is taking care of things on her own without having to check in on her by phone.
     
  9. hawkeyegirl

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    Well, considering that sensors can fail at any time, or Dex can go to ??? unexpectedly, I'm presuming that you're going to stop using Dexcom altogether, because it is not infallable?

    Look, the alarms on CGM in the Cloud are buggy. That's not a secret, and it's talked about often on the FB page. It is frankly quite irritating that you persist in your warnings about CGM in the Cloud on here, especially since you are primarily "warning" a group of parents who have years of experience with CGM, many during its infancy when its bugginess would have had you clutching your pearls and calling for the smelling salts. It's like if I posted in every Dexcom thread that it sometimes fails, that the readings are not always reliable, that you should always do a confirming fingerpoke before treating, and therefore we are NOT using it.

    We are not going to use the system at school, and do not use it around home. But it will add an extra layer of security for me when he is with friends, and if it stops working...we'll just do what we did before we had it. It's really not like anyone is just throwing this into their kid's bag and forgetting about diabetes for the day.
     
  10. Darryl

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    Nightscout (CGM in the Cloud) does not have well-defined alarms and backup safety measures (such as an alarm when there is no data) as of yet, so it is not yet the best option for overnight monitoring when the parent is asleep. But as pointed out above, the Dexcom itself has no alarm when in ??? status, and other methods of getting the sound into the bedroom (baby monitor, etc.) are also not completely reliable. Currently, we try to ensure safety overnight by using two Dexcom G4's, one with alarm thresholds at 80/120 on the night table, the other in the hallway, both in Hypo Repeat mode (beeps/vibrates nonstop if BG hits 55), and a BG cal right before bedtime.

    Nightscout, right now, has tremendous value in monitoring a child's BG during school, activities, and any time that you are personally awake to view the BG data.

    To get around the reliability concerns with the public internet, the Nightscout app can be developed over time to include alarms for loss of internet connection, missing data, low battery, Dexcom errors (???, etc.), so that it will be just as reliable "in the bedroom" as the current Dexcom solution all things considered. Even if failure of the user's device would be of concern, the app can be installed on two or three devices in the bedroom bringing the chance of failure to near-zero, and can also be ported to alarms that make "real" noise as opposed to the meek beeping and buzzing of the CGM. This is all relatively simple software implementation that the Nightscout open source community can and likely will accomplish in the coming months.
     
  11. hjo89

    hjo89 New Member

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    We just got set up with CGM in the cloud, and we LOVE it. I see us using it all the time! Especially when our sugar baby starts preschool next month. We are very excited.
     
  12. mmgirls

    mmgirls Approved members

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    I can only imagine how our life may have been different with this type of tech when my dd was just a toddler. It's funny that I am currently grappling with how to implement this in the school, or even if I will.
     
  13. mamattorney

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    Substantive update to the community version overnight. I believe you need to update your fork to obtain it. When nightscout doesn't receive data for more than five minutes, the "minutes ago" section is first highlighted in yellow (first time I looked, last upload was 8 minutes ago), then red and the BG is crossed out. Also a settings bar where you can switch the display from mg/dL to mmol/L.

    [​IMG]
     
  14. jenm999

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    That is very cool. I notice the blue "prediction" dots to the left of the time axis but my MIL, babysitters etc. do not so this will be a helpful tool. Does it alarm?
     
  15. denise3099

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    Hey, where'd you get that cord? Want want want want. I have a short usb attached to a short OTG but you seem to have a two in one. Gimme gimme. Does it still charge the dex. I want to sugru around the dex port so I don't have to remove the cord since it charges off the phone.
     
  16. mmgirls

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    single OTG cord from Hack shop
     
  17. hawkeyegirl

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    Well, WTF? Why is this thing not all over the CGM in the Cloud FB page?! Much nicer than the bulky think I got!
     
  18. mmgirls

    mmgirls Approved members

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    It was a while back, the company actually went out of stock! I like the idea of it but wanted a right angle usb OTG for my setup to reduce size and possible damage to the micro usb ports. Now if they can make it with a right angle OTG and a left angle micro usb I would pay twice the amount!
     
  19. Darryl

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    I think you can still order them from hakshop. The only downside some have pointed out is that the cable ends are straight which could put stress on the USB ports. I just ordered some right angle adapters that I will try and report on how they work.
     
  20. denise3099

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    I ordered last night as soon as I saw the post. I'm going to use sugru on it to permanently, mostly, affix the end into the dex port so that should help with securing it and not damaging it. I can't wait.
     

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