For today’s state of the art, I agree with Eric’s suggestion to learn manual pumping with CGM before looping, because that will make it easier to see cause and effect.
I think the hope for closed loop systems is that they will just do what a pancreas would have done, very well and fully automatically — but they’re not there yet. For me, LOOP is always trying to push the BG in a good direction, and this definitely reduces the burden on me, especially overnight, but I find that I get better time in range by working cooperatively to give or withhold insulin to a greater degree than LOOP would do. In particular, LOOP takes great care to avoid giving an overdose of insulin, because it can’t recover from that error. By contrast, I can give an aggressive bolus or correction if I think it is needed, with the knowledge that I can add carbs later.
But in any case I think you will never know what Ethan’s perfect IC or CF or basal schedule is, in that these things vary, particularly before adulthood.
Our son is on Loop and while it has been amazing given the options, I would jump ship to an out-of-the-box solution in a heartbeat if the control provided was better. Loop is a hassle; you have to do all this dumb computer stuff, and renewing your Apple developer license every year, and carrying around this little orange box, and blah blah. You spend a lot more time tweaking settings because there are different “approaches” and the interaction of all the variables is much more complex. I learned this firsthand while giving advice to another parent whose kid is on a “dumb” pump, and realizing how much easier it is to deduce the problem in that context.
Commercial products definitely have a better user interface. You also get user warranties and, theoretically, some technical support, although in practice I don’t think that’s hugely beneficial. Also, most endos will be trained on those systems, so if your endo is good at calculating settings (most aren’t), then it might make it easier for them to help you if your son is on a commercial system.
So I don’t think it’s a trivial consideration.
That said, we’re obviously on Loop because for now it’s the best option. Really really hoping the Tsport comes out soon though; if that becomes an option I suspect we’ll jump to that. Or the Horizon algorithm. While it might target a higher baseline, I’m guessing there are ways to get around that.
I agree with you for the total loop solution (i.e. basal adjustment), but if I started with Tandem today I would still enable Basal IQ if that was an option. It helped us avoid so many lows…
The problem might be that a new person does not know what their correct basal rates are. And if Control-IQ or Basal-IQ were making adjustments, they wouldn’t know what they should be.
Everything is fine when it’s working. But if you have a transmitter death and have to wait a few days for a replacement, you might be in a bad place if you didn’t know what the actual basal numbers should be.
So my advice to a new person would be - spend a few weeks dialing it in as best as you can, and then turn the algorithm on and let it help you.
Not for me. With the t:slim years ago, if I wanted to take 2u insulin it required some enormous number of keystrokes, like 17 or something, with multiple layers of menus and redundant confirmation dialogs. I found it to be painfully tedious and frustrating, every single time. With LOOP it is just [bolus], 2, [deliver].
I might take the other side of that with respect to Basal-IQ. Basal-IQ pretty much just intervenes to prevent severe lows. Isn’t it just as easy to recognize a problem by seeing that it has been suspending, rather than seeing actual lows happen?
Well, human nature gets in the way. As long as BIQ is fixing the problem, a person may not make an adjustment to their basal settings. They may just continue letting BIQ fix the problem.
For a proactive and conscientious person, sure they will make the basal adjustments when they see BIQ has done stuff for them.
But a lot of people aren’t like that. They may be like, “Hey, I woke up at 90. All is good!” and just keep it the way it is.
I don’t think the paradigm of basal/bolus are super useful for CIQ. While you need to have the right settings, those don’t correspond at all to the “right” settings you’d use in an open loop pump. And, having used both Loop, openAPS and CIQ now I don’t think the latter is really using basal rate the same way the former two are… I’m not sure I can explain it all that well, but it really seemed like it did a good job of preventing lows at higher basal rates that I KNOW would send Samson plummeting if they were just his programmed basal rate. Whereas if I used those same settings in Loop, it would be a disaster. Instead, I think of them just as generic “knobs” that dial strength up or down.
That’s what I’ve been doing for the past 16 months…perfecting my skills at pumping insulin after making the switch from MDI. Things will never be perfect but it did not take long to develop a comfort factor with basal rate adjustments, fine tuning ratios etc.
When Omnipod 5 comes out I will be ready and comfortable with the tweaking it will require. I have developed a strong distaste for spending time staring at a laptop, which is honestly the only thing holding me back from starting Loop.
So I pursued @Eric 's suggestion of doing a self-paid 30-day Omnipod trial because my insurance company doesn’t take part in the 30 days to freedom promo. I knew medical rules were odd, but I never realized just how odd.
I contacted Insulet to do a self paid trial for 30 days. The inital CS rep cheerfully quoted me a price of $477 US which breaks down to $200 for the PDM and $277 for the pods. I can make that work, and I’m curious enough to pay the money. All they would need is an Rx from my Endo and a credit card. Rx and CC supplied within days of the initial call. Now comes the odd part. Insulet told me that if I did a 30-day trial and paid for the PDM/pods as a cash pay out of pocket no insurance, and if I decided to pursue regular coverage using insurance in the future I would always be a cash pay customer even with insurance. Insulet’s reasoning baffles me. Their rationale is that if I purchase a PDM as a cash pay customer, when/if I initiate regular service through my insurance, because I already have a PDM in my possession, they would not be able to bill my insurance for an initial new customer order of PDM and pods. Since my insurance is not part of the equation for the primary transaction, how or why would they, the insurance company, know if I posses a PDM or not? Insulet seems determined to inform my insurance company of any transactions with Insulet whether I pay cash or not. Why?
Why is my insurance involved if I’m as cash out of pocket no insurance customer? Why does my insurer need to be involved or even be aware of my cash purchase? As far as Insulet is concerned, if they sell me a PDM with the first set of pods as a cash sale, then they are unable\unwilling to sell me a second PDM at a later date through insurance. They also state they are not in the business to only sell pods, especially to insured patients. What, isn’t that the primary business model to sell pods to insured patients on a recurring basis?? So if If an Omnipod user possesses a PDM, no one ever has gotten a second PDM? Seriously? I actually know several Omnipod users who have multiple PDMs. All they did was call Insulet and buy another for $200, no questions asked. I personally have 2 brand new in the box Dexcom 6 readers I will never use. Insurance paid for both. Outwardly this seems like a potentially well meaning policy that doesn’t work. Yes, I’m an edge case. I’m now an edge case who is no longer interested in being a recurring insurance customer. Good job Insulet! You must have so much business you are no longer hungry. It’s actually easier at this point to buy a PDM and pods on Craigslist/Amazon/EBay than it is to do it legally through cash or insurance. Go figure.
I say you just say screw it and let this community help you out. lol. I’m happy to send you a box or two of PODs (Eros Pods…not the Dash pods). Can’t get rid of the PDM as it’s the only one I have and may need it one day myself if an emergency happens, but happy to send some PODs out to you to use. I’m sure someone around here has a spare PDM they’d be happy to send you. Send me PM if you are interested!
Thanks @ClaudnDaye I’m only looking to try the system out for a few weeks, because my pump warranty is almost up. I like the idea of being tubeless, but after my interactions with Insulet I’m not sure I want to deal with them going forward. I might actually reach out to my Endo to just send an Rx to Costco and do the CMPP cash price. CMPP doesn’t take insurance because the pricing is cash based, so it should solve the issue.
Yep, I understand. That’s why I’m offering and I’m sure there are others that would offer up the PDM…if you can get your hands on these things without involving Omnipod/Insurance then IF you like the Omnipod system, you can then work with Omnipod and Insurance and have all the billing issues nonexistant (cash - vs - however else you would be paying).
Happy to send a box or two…I have a big surplus of PODs stashed away.
This is our way of “sticking it to the man”…if insurance and the powers that be are going to try and screw us in one way or another, we’ll work to help each other avoid those unnecessary stresses in our lives. lol
No idea why Insulet is getting so red tapey about a cash pay customer but if you need a freebie Eros PDM I have one still in the box that I will be happy to send. It was my spare that I cash bought but never used. No longer needed as I am switching to Dash pods.
I’m only looking to try the system out for a few weeks, because my pump warranty is almost up. I like the idea of being tubeless, but after my interactions with Insulet I’m not sure I want to deal with them going forward. I might actually reach out to my Endo to just send an Rx to Costco and do the CMPP cash price. CMPP doesn’t take insurance because the pricing is cash based, so it should solve the issue.
