The PDM is about $200 bucks directly from Insulet. So if you buy it directly from them instead of going through insurance, you don’t really get locked in, since insurance did not pay for the pump, YOU did.
If you call Insulet, tell them you want the $200 price for the PDM, or it’s no dice. Like you need to let them know you want that price. For some reason they start at a higher price, but their best price is $200 if you haggle with them. (That price may be slightly different now, but you can definitely get it for super cheap!)
I can actually give you the name of a rep at Insulet who can make sure you get it for their lowest direct-buy price.
So if you do that, insurance is only covering supplies (pods) and not the pump. So you are NOT locked in.
This might be a way to try it. Insulet has a money-back guarantee for the PDM. They will give you 30 days to try it.
That covers the PDM. And I can send you a month of pods to use, for nothing.
If you don’t like it or don’t want to use it, you can return the PDM and get your money back from Insulet. It’s no hassle from them, you just call them and tell them and you can return it.
So if you don’t like it, there is no risk. You are out nothing. And if you like it, then you can get the pods covered by insurance.
I know giving an address to internet strangers can be scary. If you want, ask any of the FUD regulars about me.
Sure, he tried both and the ability to remove the pump was what cinched it for him, plus the interface felt better to him. Because we still inject 50% of his basal (Lantus) he can remove the pump for sport or exercise for 3+ hours without trouble. So while I am jealous of the loopers ability to really fine tune things, my son’s experience with CIQ is that it is good enough for us (mid to low 6’s for A1c) and my son wears a fabric pump belt, which means he is just tucking everything (including the tubing) under his clothes and that feels the best to him and minimizes tube snags. He didn’t like that he was locked into the Omnipod with where it was placed, and it didn’t help that during our trial he had a kid hard slide into him at home plate and knock the omnipod off.
You are a superstar here @Eric . Loved the recent post by @T1Allison and your meeting up!
Correct me if I"m wrong, but if you DIY loop you don’t even use the PDM, right? Guess I may be worried about getting in some kink with my insurance where I agree to buy the PDM, and they only supply the pods but I still get locked in. But it is just the PDM that is considered DME I take it.
In all honesty, I’m just nervous about moving to a pump. I’m excited, don’t get me wrong, and I think we’ll be much happier once we make the adjustment (as that seems to the shared experience by so many). And I’m looking forward to that aspect. Everything I’ve read says it takes some time to get used to, and the hardest part is getting all your settings dialed in to optimize the use of the pump (after all, it’s only going to be as good as the information we give it). But I don’t know how quick I want to jump into looping, as great as it sounds. Part of me says something like the Dash would be a decent start, giving is more control than MDI, but not totally depending on a loop. Get comfortable with that, then move on to looping. If I’m not locked into Dash, then I can move on at any point, be it 2 months or 2 years.
I think it is just absurd for insurace to work the way it does.
Correct. I haven’t used the PDM for years now…it’s sitting in our closet just in case we have to revert back to it at some point in time…hard to predict uncertainty.
I can get the anxiety but once we went to pump it was a major quality of life increase for us and one of the best decisions we made for Liam.
It is going to take a few months to get everything dialed in and recognize the new problems that pumping adds to the equation. With that being said, it was by far the best decision we made because it gave my son the ability to be more spontaneous than before, and that was gold, watching him not have to plan things so far in advance. And when the wind blew in a different direction, and he was invited to an unexpected event, instead of having to say no or miss out on what was offered (usually food, but not always) he was able to just go! It took a weight off our shoulders for sure.
A good example, last summer he and his brother took an impromptu 25 mile 4000 foot hike and went really fast. We didn’t even think about saying no, he just adjusted his basal, grabbed his stuff and off they went. He was one tired puppy at the end, but he didn’t have to eat all day because he could turn down his basal.
This is the part I’m not looking forward to. 1) getting everything dialed in correctly. I’m assuming the drs. and CDEs will help us with that, but I’ve not been happy with those interactions. I basically quick calling after our 3 week mandatory time at the beginning. But, we’ll get there. and 2) recognizing when its a problem with the pump and how to trouble shoot. With MDI there’s no trouble shooting in that regard- insulin and and you have to deal with it. But, like everything else, we’ll get there.
gave my son the ability to be more spontaneous than before, and that was gold, watching him not have to plan things so far in advance. And when the wind blew in a different direction, and he was invited to an unexpected event, instead of having to say no or miss out on what was offered (usually food, but not always) he was able to just go! It took a weight off our shoulders for sure.
And this is one of the biggest reasons I’d like to move to pumping. He was diagnosed during COVID lockdowns, so at that time it was easy to keep to a schedule, and there weren’t a whole lot of activities to attend to. Now that real life is returning, I’m realizing just how difficult it is to keep to that. I have another child and other responsibilities- sometimes meals get delayed, or skipped, or have to happen earlier than normal, or we’re just living in the moment, aren’t hungry, and don’t want to eat. I want him to have the flexibility to do what he wants to do.
When thinking of this, have a “long term” view…what is a month or two compared to a potential lifetime of benefit? Yes, it’s long. Yes, it’s tedious, but there is an end goal that makes it all worth it. It took me some time to do the complete transition but the benefit I’ve received now FOR YEARS…and many more years to come, made all that stress and headaches worth every minute of it.
Our doctors are worthless for this kind of fine-tuning. We did it all on our own and I expect you’ll end up doing the same once you get more comfortable with things. Endos write our scripts and watch for long-term possible complications…we do everything else.
Liam eats anytime he’s hungry…we don’t have schedules for him. Yes we have set times where we want him to eat breakfast, lunch and dinner but even those are flexible.
I get it I get it But I can’t imagine getting started with a box of PODS and a PDM on my own. I’d feel more confident if I had pumping experience (PODS or not) before.
BTW, if you do it, I’d suggest just normal pump use for a while before you dive into Loop.
Absolutely. A) I want to make sure we have his settings right before any kind of looping gets involved. B) I want to make sure I understand what the algorithm is doing and what hiccups we may encounter (already have lots of questions there)
I just want whatever system that he’ll be comfortable wearing, that will give him the most flexibility to his life, that will take a bit of the mental burden off me (and eventually him), and will give us a greater peace of mind in helping us keep him safe and healthy.
Your whole respone @ClaudnDaye is exactly my hope.
When thinking of this, have a “long term” view…what is a month or two compared to a potential lifetime of benefit?
Yes, I totally agree. A month or two (or maybe more) of tedious fine tuning will definitely be worth it. And that is what I have in mind is the other side of the transition.
Our doctors are worthless for this kind of fine-tuning.
I have found that to be true with MDI. On the few ocassions (maybe 2 or 3?) I called after those manadatory 3 weeks, I got no where. Just a “what are his numbers, try this, good luck”. In all fairness, they indeed are just guessing as everybody is different. But I’m very analytical and wish to have a longer discussion of to try to gain a greater understanding of what is going on, even if the solutions are just conjectures. Plus anytime you call you get a different CDE, and they are all different. I often wish I could find one I really like, develop a relationship with that one, and email/call when necessary. I live within one of the top medical institutions, and it’s the only game in town for kiddos for a huge radius. And likely because of that, they just don’t have time.
Liam eats anytime he’s hungry…we don’t have schedules for him. Yes we have set times where we want him to eat breakfast, lunch and dinner but even those are flexible.
This.Would.Be.Wonderful. Yes, we have general set times, too, and many days it works out ok that way. But sometimes he’s not that hungry. Or sometimes he’s really hungry. Sometimes he hungry for more snacks in the day, sometimes not. Pretty typical for a growing kid.
This is why we created FUD. Endos just can’t provide the kind of real world experience and knowledge that a community of diabetics and analytic thinkers can. We bounce ideas off of each other, learn from each other, vent to each other and we are a real family-oriented commity and actually care for each other, each others kids, and really set out to help everyone solve whatever problem they are having. Endos just have too much to do, too many patients, and with the vast variance that exists with each patient they just aren’t capable of helping every patient understand the intricacies of everything or help fine-tune things. That’s what FUD is for…helping each other live unlimited lives despite diabetes.
I understand. If you want the Insulet educator to do the training, you can buy a PDM from Insulet. And they arrange training for you. And the 30 day return period actually starts from the day of your training. (At least that was how it was arranged a few years ago. I imagine that is the same.) So it’s a nice way to check it all out with no commitment.
All you need to get the PDM from Insulet is a prescription. And if you do a cash buy, insurance is not involved. Just tell Insulet you are paying for it on your own.
And look, I have no skin in the game one way or the other with a particular pump company. If I had a Tandem pump, I’d send you one of those. It just happens that I have the OmniPod stuff.
And I think trying it out is the only way to figure out if you want to use it. Just like you test drive a car before buying it.
Really the only thing to figure out with a pump is basal numbers. All of the other stuff is pretty much the same. If you use carb ratios now, or correction numbers now, all of that mostly translates. The only thing to figure out is the conversion of Lantus to hourly basal rates. (The pump educator will of course go ridiculously over-cautious when you start. Most likely they will use a formula based on Ethan’s current total daily dose (TDD) and weight, and give you a set hourly rate, using their magical “…about 50% of TDD should be basal…” estimation. From there you will have to tinker with it and make adjustments over time.)
The pump training stuff and basal rates are just a starting point. Good basal adjustments come over time, and can come from asking people here and analyzing things. If you ask a question, a few posts from the parents here will give you 100X the info you get from a trainer who most likely does not have a child with T1D.
All you need to get the PDM from Insulet is a prescription.
I won’t be able to get a script until after my June 3 class- how long after I don’t know. I have no idea what other hoops we’ll have to jump through.
And if you do a cash buy, insurance is not involved. Just tell Insulet you are paying for it on your own.
Ok, so I can pay out of pocket for the PDM for the Eros pod to be able to take advantage of the 30 money back trial is what you are saying, right? Would I be paying for the 30 day supply of Pods as well? Does insurance only get involved AFTER the trial?
Is there any difference between the Eros Pods and the Dash pods, besides the PDM design? When neither one is looping, do they really operate any differently? There’s no way I’d be ready to be looping during that 30 days, so not sure if I’d really know the difference or not (other than whether or not he tolerates the pods well or not. We’ve done the demo, and as far as just keeping it on, that wasn’t a problem (for n of 3 days. granted, we didn’t see whole lot of scenarios where he’d knock it off anyway))
If you ask a question, a few posts from the parents here will give you 100X the info you get from a trainer who most likely does not have a child with T1D.
I’m sure ya’ll will be sick of me in the coming months
Insurance is only involved if you put in a request to them for coverage. So don’t turn any of this in to insurance.
If you deal with Insulet, you tell them you are paying for it yourself. And you buy just the PDM. Tell them you are going to get the pods after you get the PDM.
But you don’t need to buy any pods! Your first month of pods will magically show up at your doorstep for nothing.
The big question though is … what insurance do you have? The reason I ask is that if you decide to keep going with it, you will need insurance for the ongoing pod supply.
And the only possible problem you might have is if you are covered by United HealthCare. Any other insurance company will approve omnipods almost automatically. UHC is ridiculous. That is the only thing we would need to discuss first, is if you have UHC.
They are not interchangeable. But as far as the physical design, they basically look the same and work the same. Except you can’t switch them
Your decision on which pods and PDM to use come down to 2 things. 1) which PDM do I like better and 2) do I want to Loop one day or do I want to use the eventual loop system that Insulet will have one day.
Nope! Trust me, this place is nothing but patient. Ask for a million, you will get a million +1.
I know I"m still new here, but the help you provide to those who reach out for help is immeasurable! Truly.
The big question though is … what insurance do you have? The reason I ask is that if you decide to keep going with it, you will need insurance for the ongoing pod supply.
I’ve already reached out to both Insulet and Tendem and my insurance to check coverage. I’m covered no matter which direction I choose, so that should not be an issue. The only issue I discovered was the coverage with DME vs Pharmacy, but that seems to be consistent across the board with insurance companies.
Your decision on which pods and PDM to use come down to 2 things. 1) which PDM do I like better and 2) do I want to Loop one day or do I want to use the eventual loop system that Insulet will have one day.
This is the big decision, here, especially #2. There’s so much positive feedback with Loop that I almost feel stupid not going that direction. But for me, personally, there’s some comfort level with going with something that is not DIY and has the support of the company behind it. That being said, the speed at which Horizon and/or Tidepool is reaching the community is abysmal, and I"m sure Covid has slowed that even more. I haven’t read/heard anything recent, so who knows when that would come and further when we’d be able to take advantage of it. Something to be said to knowing I could jump into Loop when we feel ready to jump into loop, not when a company or insurance says so.
I hope I can pay it back sometime. Truly a great group! I’ve gotten far, far, FAR more help here, both directly and just reading through some older threads, than I have gotten from our medical team or anyplace else.
This was what drove me to Loop…the mentality of “We are not waiting” - #wearenotwaiting. Yes, the official loop is going to be awesome one day and we may jump on that bandwagon when it comes…but what about between now and n…whenever n will be? No one knows. Dates are typically not met, expectations are higher than the actual product that ends up being rolled out and support may or may not be there from the official loop when it comes…or not to the level of support that you may need. DIY on the other hand is a community of people who aren’t waiting on any official solution, we have a vested interest in helping write or support the product and we are all there to help baby each other with support if that’s the kind of support that’s needed.
To me it came down to the simple truth of…I don’t know when the official loop is coming, but I want good BGs and good diabetes management NOW…because every day/week/month that he has good management, the better his life is now and the better he’s set up for when he’s an adult. Additionally, I personally feel much better USING A DIY product that was developed FOR FREE by a community of caring individuals who want to do nothing but help the diabetic community. They have nothing to gain from the help except to make their lives, and the lives of others, better. There isn’t a financial motivation behind the development of DIY solutions so I honestly trust them even more…and have given my own time toward the effort where I thought I could add value.
I know you’ll make the right decision for you and your child no matter what! There is no wrong answer…there is only what’s right for you and your situation and whatever you decide, just own it and run with it.
The older version PDM (the one that allows you to Loop if you choose) currently provides the same practical funtionality as the newer Dash system. I mean, right now since Dash does not have any automatic basal adjustments, I don’t know why anyone would go that route.
Down the road, once Dash does the automatic basal stuff, you could switch over to it easily. It’s not like a normal pump that costs $5,000 and your insurance makes you stay with it for 4 years. I am sure the Insulet people would let anyone with an old PDM switch to Dash without any hassle. And even if they don’t give a free switch, it’s just a few hundred bucks to buy a new Dash PDM.
So my thought would be - why not get the older PDM. If you don’t want to Loop, you don’t have to. You can use it just like you would use the new Dash PDM. But if you do choose to Loop in the future, you have the correct pods for it.
If Insulet eventually gets their Horizon Loop stuff going, then you could switch over to their new system fairly cheaply.
And one other very important thought…
Before you ever use any Loop system - either your own, or a company’s FDA approved Loop system - you really really really should do a normal non-Loop pump first. Otherwise you will always be playing catch-up on learning basal.
If a pump is constantly changing Ethan’s basal rates behind the scenes, if that is the first pump you use, you will never know what he really needs. You will never know exactly what is IC or CF is, or what his normal basal rates should be.
I think that is a pretty bold statement for me to make, so let me ask for confirmation and a sanity check on it.
But I can’t imagine getting started with a box of PODS and a PDM on my own. I’d feel more confident if I had pumping experience (PODS or not) before.
is a pretty bold statement for me to make, so let me ask for confirmation and a sanity check on it.