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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. mmgirls

    mmgirls Approved members

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    I can count 6 families that I know of, but is there more?

    I honestly have not used it as much as I thought I would at this point, but it is summer and I have not gotten away from them like I wish I could!!!

    But I love that I am sitting here at the computer and "know" that my dd's CGM is reading 125 as of 5 minutes ago and while she could be across the world she is at Grammys house 10 miles away. left her at the tutor today and "knew" her CGM number at pickup, "OK honey, can you please test/correct and cover 40 carbs?", so many intrusive steps skipped when her BG was 183 and I knew she would be wanting to have a meal.

    NO, it is not perfect. But, better than a few weeks ago.
     
  2. StacyMM

    StacyMM Approved members

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    I am. We rarely use it - mostly test days, baseball practices and their first day with a grandma that isn't diabetes trained. We don't really need it until they go on vacation without us, and then not again until school starts. It was nice at baseball, though - never had to ask him for his number (he keeps the receiver in his pocket, usually) because his kit was hanging in the dugout and I was in the car. Two hours of reading, with regular glances at my phone. Awesome.
     
  3. mamattorney

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    We use it, but generally only at night.
     
  4. denise3099

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    I'm hoping to get set up in the next few days. The kids are home dh for the summer--he's a teacher--so I probably don't need it now but I'm really hoping that it will help when dd goes back to school. Also, I learned about Ting and that in itself was worth learning about. I'm moving to Ting entirely and will save about 100 bucks a month on cell service! Can't believe how cheap it is. I'd love to see pics of ppl's set-ups (or rigs as they're called on fb). Post your rig pics!

    ETA: https://zb1n5q2qje7.ting.com/ if you use this link to get on ting to sign up you'll get $25 off. (and so will I :) ) I had forgotten to use a link from the fb group when I signed up but I was able to use one later to buy an iphone so even if you are already on and want to get a phone you can still use it. I'm starting with just dh's phone number to make sure we can get good service.
     
    Last edited: Jul 22, 2014
  5. DavidN

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    We use it. We used it a lot for baseball, less so now. Now we use it for one-off situations like tennis lessons etc ... He won't be using it during school - too many devices to carry around. We sent him to a sports day camp, and it was terrific. It was then that I called it a game changer. But I'd like to take that back. It's great for those situations when he's away from a D knowledgable caretaker (field trip, day camp, sports practice, date night), but outside of that, it's a nice convenience to have, but not a game changer. The CGM is a game changer. The CGM in a Cloud not really. But we are VERY glad we have it for those situations that created lots of anxiety in the past.
     
  6. hawkeyegirl

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    We have it, but have not used it much yet. For us, it will see sporadic use for things like play dates and overnights.
     
  7. jenm999

    jenm999 Approved members

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    We use it all the time except at night. He's upstairs now with his sister and 105. At night we charge the phone and I have the receiver right on my nightstand. Since our beds share a wall it works beautifully and I. And I can hear the alarms.
     
  8. kiwikid

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    I'm hoping to use it next year when Rachel is at boarding school.. I need to make sure it can be set up through NZ telco's etc..
     
  9. DadCares

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    This looks awesome. What can I do to be a beta tester or access this technology?
     
  10. jenm999

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    Everything you need to know: http://nightscout.github.io/ If this is beyond your technical expertise, you can ask for help on the Facebook group (see page for link) and there is a tech student in India who will help for a small recurring fee.
     
  11. denise3099

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    Yep. I'm surprised there isn't a major thread or sub forum here for this. Doesn't seem to be much activity on CWD re this. On FB ppl ask super tech questions like I got this error message, what to do now, and get helpful repsonses. But they also ask Anybody have a good kit for a 10 yr old boy, etc, like here. There are step by step instrucitons, in the same way that mapquest can give you step by step instructions to get from NY to CA--you WILL get lost. And the quickguide is only quick in a geological sense. But it can and is being done by regular ppl.

    Basically you use two cords to connect your dex reeiver to a droid phone. The dex sends to data to that phone and that phone sends it to the "internet." Them from any internet device, phone, laptop, tablet, etc. you can see your kids' bs. Many ppl have added a pebble watch that connects to your own phone in your pocket through bluetooth, so that rather than use your iphone to look up bs on the internet, you pebble is reading the info from your phone and it has the bs on the screen all the time. Data goes from dex to droid to "cloud" to parent iphone to parent pebble watch, or from cloud to any place you can log on. Your kid carries the dex/droid combo in his kit or bag or wahtever. I'm still working on the idiots guide to the dex/cloud for dummies. I have my fingers crossed.
     
  12. DadCares

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    This is really cool. So has anyone connected the Dexcom to an iphone? Our setup is that our daughter with the Dexcom has an iPhone. We have Androids.
     
  13. hawkeyegirl

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    You can get readings on an iPhone, but the phone that the Dex is connected to by cords must be an Android.

    You wouldn't want the phone it is connected to to be one of your current phones anyway. Data transmission is interrupted with calls and texts, and using the phone with the Dex is hard on battery life. Most people buy a Moto G from Target (currently on sale for $59.99) or a used phone on eBay. The phone that you use for your uploader phone must have OTG capability. We bought a used Samsung Galaxy S3 on eBay. It's more expensive than the Moto G, but you can buy an extended life battery for it (which isn't possible with Moto G) that will give you about 48 continuous hours of operation. (People are getting 14-18 with the Moto G.)
     
  14. cm4kelly

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    I have to first admit that when I saw the CGM in the cloud idea I was very excited about the technology. BUT -

    the more I thought about it, I wasn't sure how I would use it. For instance, my son is 7 and in second grade. He has a wonderful school nurse and a great latchkey director who takes care of his diabetes care. They communicate with me daily about how he is doing.

    If I work 45 minutes away from school and were monitoring his blood sugar through the cloud and he was high or low, I am not sure what I would be able to do about it anyway. It seems like it would just make me worry MORE. I decided not to move forward with the technology.

    Does anyone else feel this way? - or share your thoughts. Thanks
     
  15. denise3099

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    I think that's an important point--just because a new tech exists doesn't mean you have to use it. I strongly feel that PWDs or families have a duty to keep learning, to keep trying new things, to assess new technology, but then to decide how to best manage their care. I think it's so great that your first reaction was to learn more, not to jump in or to dismiss. If we stop learning and assessing new tech we are left testing bs by peeing in a cup while the rest of the world uses 5 second meters, cgm, alert dogs, etc. So yeah you have to learn about pumps and pens and different treatment options. And then you make a decision about how this could or should work into your life. This is a really nice approach in a world of such rapidly moving tech development. (I myself tend to jump on the next big thing.:tongue: but I really like this measured approach.)
     
  16. mamattorney

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    I've gone through a long thought process with this technology and my opinion of its role with my family is still evolving. I thought I would use it a lot more. The good news is, we use it every night, so I don't feel that gathering ($$) the supplies was a waste. But with my daughter being more and more independent, I thought I would use it more this summer - when she heads to the pool with friends or bike riding downtown, etc, but I didn't. At this point, I trust her to take the right steps, or when in doubt to call me. I don't feel anxious like I thought I would not knowing her number while she is especially active.

    I was also dead set on her taking it to school next year, but I've almost certainly decided against that too. I wanted to do it - not to necessarily watch her number, but more so that she could skip the nurse more at school. But I think I've decided that I'd rather not give the nurse access to all of her numbers and will try to maintain the system we had in place last year where she electronically communicated with myself and the nurse a couple of times a day.

    I think the technology is great and convenient, and I'm using it at night (whether she's at home or somewhere else) - that's her most vulnerable time because she rarely wakes to lows. It might be perfect for daytime use for other kids based upon their individual circumstances. If she starts to flake out and not bolus and I'm checking graphs and think that a reminder from me (seeing the daytime numbers live) would be better for her management (catch the double arrow rise before it hits 400), I will probably change my mind again.
     
  17. jenm999

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    Totally depends on your kid and your caregivers.

    We don't use it at night - his room is near ours so I just keep the Dex itself on the nightstand. Examples of when we do use it: The school nurse has it up on her computer so she can make sure he's not falling during gym. I keep it up on my laptop while working if he's elsewhere in the house. I look at it on my phone if my mom or MIL, who are conscientious but not super educated in d-care, are watching him - quick phone call "He's 85 with a down arrow - give him a glass of milk" prevents lows. My DH does the breakfast shots and meal planning, and he'll occasionally switch things up food-wise and then watch the rise from work. It just gives you another way to keep tabs.

    And mostly I like that I don't have to ask him or be in his personal space while he's playing to check the Dex. Our son keeps it in a little zipper cross body bag, which is on his person only if he's on the go - usually it's on the back of his chair, hanging on the doorknob to whatever room he's in etc. The bag also has his glucose tabs in it, which we want him to have on or near him at all times. He's also too young (6) to take action based on the alarms - "Mom it's beeping I'm LOW" is about the most we can hope for, so it's more for us.

    I would point out that the phone is the only significant cost. We paid $80 for it at Target. The other two items (cord and case) were < $10. So it's not a huge investment, and you can cancel the phone service after a month if needed. Try it, see if it works for you. If it doesn't throw some minutes on the phone and put it in your glove box or give it to your tween for an emergency only prepaid phone.
     
  18. sszyszkiewicz

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    We are not using it.

    For those of you reading this, and have not heard my caution before, there are far more reliable ways to get an alarm into your bedroom than using CGM in the Cloud. Just remember that getting noise into your bedroom is a completely different scenario from knowing what the number is on the Dex. That is not a putdown of the technology or the skill/devotion/ingenuity of the folks who work on the project. It is a statement about the uncertainties associated with using the public internet. For you parents that are using it, this is not any sort of statement about CGM in the cloud, or your judgement, or your care of your child. This is a statement about the overall reliability of anything that depends on the public internet for something (really) important.

    Just remember, getting sound into your bedroom is one very special case that should *never* fail.
     
  19. mmgirls

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    I really do find all your cautionary statements odd.

    No system is 100% reliable and will never fail. I am using this system as an add on to what we normally do not a replacement, and I think most are. Yes there can and will be times that the data can not be seen remotely, there are many pieces to this set up where an issue can arise.

    I am really not using this system at night and more so wil be using it during to day to be able to ask less questions of her or her caregivers because I will know what her BG was at snack when they might call at lunch, or whether that new site I put on in the AM is working better or if that did not correct the issue and we have sickness coming. My daughters have a wonderful school but you can not possible write everything into doctors orders and I wil greatly benefit from this system when having 2 kiddos in school one that is honeymooning and one tha is venturing off into being independent in diabetes tasks.

    I am thankful that there are people out there willing to buck the system and move forward in simple ideas that can meaningfully benefit many.
     
  20. flinkity

    flinkity New Member

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    I see it for what it is and am grateful.

    CGM in the Cloud isn't really about getting sound into your bedroom. There are lots of reliable ways to do that.

    It also isn't for anyone who needs some kind of guarantee.

    It's meant for peace of mind in knowing what your child's blood sugar is at any moment, whether they are near or far.
    It takes the CGM information which is invaluable & simply lets you have that information when your child is away from you when you would normally have to rely on your child or their school to keep your child safe or when your child is with you so you don't have to constantly ask them what their blood sugar is. It lets you have their bg values with you during the night if the Dexcom monitor range won't allow you to keep the monitor in your room while they are sleeping in their room.
    With the added Pebble watch, you can see their bg by looking at your wrist at any moment without having to even look at your phone. It vibrates for highs & like crazy for lows, so you can even sleep with it. It's also more discreet than the Dexcom alerts so as not to draw attention to your child's Dex making a public display at school. Your child can even have their own Pebble which will alert discreetly & you can text them instructions & the watch will vibrate & they can read the text without getting out their phone (also good for school).

    For me, the greatest thing is knowing I don't have to rely on anyone else to be sure to keep my daughter alive.
    I don't need a guarantee. There is no guarantee with diabetes.

    I'm grateful to all the awesome people that make CGM in the Cloud available to me & recognize that it's simply another tool to aid me in caring for my t1d.

    If it wasn't for the FDA, I'd be using diyps, too.
     

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