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I have slept through the night every night since November 11.

Discussion in 'Parents of Children with Type 1' started by jenm999, Dec 6, 2016.

  1. jenm999

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    On November 11, we began using a homemade artificial pancreas known as Loop to manage my son's T1. All of the code is online. It is *extremely* DIY so is not for the faint of heart but if you are a computer programmer, engineer, or even just the type of person to do your own taxes and repair your own appliances, it might be for you. https://github.com/LoopKit/Loop

    The system uses an older medtronic pump that accepts remote commands (got mine as a trade for dexcom sensors on facebook), an iPhone app (same phone he already uses for dex) and a little widget that translates bluetooth signal to a radio frequency the pump can understand. The app does not give boluses but rather performs a calculation of BG (via Dex), IOB, COB (you enter carbs when eating), and BG *momentum* and adjusts basal up or down using 30 minute temp basals (sometimes it will cancel and set a new temp basal every five minutes as it recalculates!) to get you back to target at the end of DIA. All of your settings are in the Loop app as well as the pump so if Loop fails you fall back to conventional pump therapy.

    Nights worked right off the bat but we are still fiddling with days because Loop manages carbs much differently than we're used to - and basal testing is a no go for my son (age 9). A1c will probably not be lower this quarter but I feel like a new woman, and my son surely is seeing the benefits of uninterrupted sleep as well.

    Happy to answer questions.
     
  2. Theo's dad Joe

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    Does the concept of IOB change? Can you chose a target?
     
  3. forHisglory

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    Wow. I'm speechless. And jealous! ;) Wish I was smart/skilled enough to do that!! Way to go!
     
  4. sarahspins

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    I've been using Loop since early July..... it's game changing :)
     
  5. rgcainmd

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    There are a handful or so of threads over on TuD (tudiabetes.org) about Loop and many very happy PWD who are users and parents who use Loop for their children. You can ask a lot of specific questions and get some specific answers there, too.

    I sometimes wish my daughter would consider a tubed pump so I could pay someone to set up a system for us (it's waaay over my head). We'll have to wait for the OmniPod closed loop system due to be released in 2019/2020.
     
  6. jenm999

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    IOB is the same, there is just a lot more data available and Loop actually does the math vs a PWD operating on hunch/experience. Loop has your current BG and BG momentum from Dexcom (quality calibration becomes much more important here) plus the insulin you've administered as a bolus, and also factors in the type of carb - you can select absorption time when bolusing so that candy and pizza (for instance) are calculated differently. Every five minutes Loop does some math and decides if you need more or less based on what it predicts your BG will be at the end of the insulin duration. It sets temp basals up or down to increase/decrease the amount of active insulin. Those changes are added/subtracted from IOB you've administered as a bolus.

    Editing to add that yes, you can select your own target, or even a target range, and you can have multiple targets per day as well.
     
    Last edited: Dec 7, 2016
  7. jenm999

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    You are doing the right thing. No sane person would set this up for someone else for any amount of money because of liability, and it's not remotely plug-and-play yet. The skills needed to set it up are also required to keep it going day to day.

    But I hope this project has the same effect that Nightscout did. I am absolutely certain that we have Nightscout to thank for Dexcom getting Share to market so quickly. And I think it's critical for the FDA to understand that this is a dangerous disease with a huge mental burden and they need to approve technology more quickly. Perfect is the enemy of the good, and there will always by DIY solutions if the market is not helping relieve us of the risks and stress of T1.
     
  8. rgcainmd

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    jenm999, I so agree with everything you've said! I just want to thank you (and smartypants people like you!) who do something positive for all of us in the D community by pushing the innovative technology envelope and giving the FDA and companies who manufacture and sell D equipment a polite but much-needed shove that results in, like you said, getting things like Share to market significantly quicker than they otherwise would. Your efforts benefit us all. Thank you again!
     
  9. jenm999

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    While I am flattered, I am a dummy compared to the people who wrote this software! :)
     
  10. Theo's dad Joe

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    Thanks. Also forgot to ask. Can you run it and also using sugar surfing techniques like hitting an unexpected spike with a hard bolus even if mathematically IOB would cover current BG? (can you bypass and "rage bolus" on instinct and experience?) Can you still shut off basal say 30 minutes before hard physical exercise? Can you "super bolus", can you run it at night but not in the day and also what kind of average can you get at night without setting low alarms? Like for example 90s or 120s?
     
    Last edited: Dec 7, 2016
  11. jenm999

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    You can certainly override the suggested bolus but typically the loop has seen the spike coming and already been working by increasing basal by, say, 300% (you set the limit). Similarly for lows a small amount of sugar is needed as Loop has seen the fall approaching and run a temp basal decrease or even shut off basal entirely.

    Yes, it has a workout mode where the algorithm is modified for physical exercise. You can customize the parameters.

    No need. If you are rising faster than Loop thinks it can manage it will add extra insulin, tweak the amount every five minutes as needed, and then shut off basal when BG starts dropping, in essence a super bolus.

    Yes. There's a toggle to switch from open to closed loop, and you can still use the functionality of the app for remote bolusing, using its internal bolus wizard (all parameters customizable) during the day. Many people do this.

    Our target is 120. He has not gone under 80 or over 180 at night in the last month but there have been some fluctuations. If you want to get really granular with basal rates you can minimize the volatility and set a lower target. Many people do.

    You should take a look at the wiki and user guide (a work in progress). https://github.com/LoopKit/Loop It's pretty great.
     
  12. susanlindstrom16

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    Super impressive! Thanks for sharing your experience.
     
  13. Theo's dad Joe

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    If it raises your basal to say 300% to deal with a late meal rise, perhaps 3 hours down the line, does that now get thrown into IOB or does it not show up? It sounds like it may take over for slow late rises from meals that get long extended boluses for now, and the concept of bolus and basal may get a little complicated.

    Also, if a site is starting to degrade, since the BP may just compensate by pumping in more insulin, is it harder to detect the site getting a little resistant. We tend to lose sensitivity at sites on day 3 fairly often, but can compensate. Can the BP signal you that a site may be conking out?

    I'd assume you could tether with long acting and the pump would just compensate very naturally. Seems like it might end up being a good strategy to combine a BP with some percentage of tethering Lantus or other.
     
  14. jenm999

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    Yes indeed. Any basal increases are added to IOB. And decreases result in negative IOB which results in reverse correction at next meal. It's brilliant. No extended bolulses, so what we do for pizza is bolus for half and then let loop take care of the eventual rise.

    No. You would notice that though as the temp basal increases appear in the app and also on nightscout if you're using that.

    This seems unlikely to work as there's no glucagon and therefore Loop compensates for negative IOB or rapidly falling BGs by suspending basal quite frequently. Are you on Facebook? This sounds like a good question to ask the group. If you message me your real name I can add you to the discussion.
     
  15. Ali

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    jenm
    Thank you for sharing. I am an adult looking at the Medtronic Closed loop next Fall. You have answered some of the questions I was starting to go through. I realize all the loop systems will work differently but you are providing some of the basic feedback I wondered about. You mentioned that you are set at 120 which was one of the big questions I had about the Medtronic. However it sounds like that gives you excellent results given the variability of even the best sensors. I am really impressed with the reduction in lows. As T1s we focus on the damage of the highs but too much insulin in your system is also damaging as well as the stress on the body from lows. I would love a system that aimed for 100 but it sounds like 120 gives one really really outstanding results, not to mention the benefit to your health of much better sleep:):)
     
  16. jenm999

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    You can change this setting to anything your heart desires! And multiple targets throughout the day/night. We chose 120 because it's low enough to keep his average under 154 (7.0 A1c - our goal) but high enough there's a good buffer and we can see lows coming from a mile away.

    I'll be honest. It's been a ton of work the last month. More than conventional pumping. Nearly everyone on the FB group, esp. those with children, compensated for bad habits, lack of prebolusing, etc. with changes to basal or carb ratios and this requires that they be really accurate, not fudged. But the nights worked pretty much right off the bat. I had no idea how chronically sleep deprived I was.
     
  17. Ali

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    Thanks, I figured you could adjust on your system however on the Medtronic one you can not:)
     
  18. rgcainmd

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    Unless I am mistaken, target BG cannot be adjusted on anything but do-it-yourself APS systems.
     
  19. Theo's dad Joe

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    What bg is it set at?
     
  20. Ali

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    My understanding is that Medtronics is set at 120. That is why I was so interested how her child was doing with that target. My understanding is that at least with Medtronic the FDA is aiming for a big safety margin for sensor error. Sounds like "rg" is more familiar than I am with some of the other systems out there in development than I am.
     

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