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Seem odd to you?

Discussion in 'Parents of Children with Type 1' started by missmakaliasmomma, Jun 26, 2014.

  1. rgcainmd

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    And I don't think it's our place to tell someone else to count their lucky stars that they haven't yet experienced any Pod failures.
     
  2. caspi

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    I was being sincere when I said that. Apparently you are looking to argue with someone this evening and that person isn't going to be me. Have a good night.
     
  3. mmgirls

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    The only way to super bolus in the traditional way on the pod would be to change a basal pattern, on the Animas I would use the "fill cannula" to give the amount of insulin I want to give so that it is not included in IOB calculations and then temp basal off. On other pumps it would be a fixed prime that would be used.
     
  4. rgcainmd

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    And I was being sincere when I asked why someone chooses to keep using a pump that they find "unreliable" or "less reliable than a tubed pump." As far as I can see, there's an awful lot of people "questioning other people about their choices" here on this forum and I don't see a lot of people thinking that it's not "one's place" to do so. I'm not looking to argue with anyone. I'm just asking questions. You have a good night, too.
     
  5. rgcainmd

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    Can you explain a "fixed prime" to me. Thank you in advance.
     
  6. Cheetah-cub

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    Another heated Omnipod thread...

    We are a new Omnipod user. My daughter is against tubing, so the pod is our only choice. For us, it is a great pump. In addition to being tubeless, we also love the fact that it can swim. We are grateful that this product exists.

    To our OP,

    We too had to do the saline start. I also hoped to bypass this trial, but our diabetes team really wanted us to. So, we did the saline start first.

    We got trained by the OmniPod trainer with our saline start. Then a few days later, we went to our hospital for the insulin start, and we got trained again by our hospital staff. We got a good 5 to 6 hours of total OmniPod training out of it. So, at least there is some upside to doing the saline start...
     
  7. sszyszkiewicz

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    I have to admit I smile/chuckle inwardly when I see these get going! One difference being on MDI is that we are deprived of getting into discussions such as these because our lives are, well, comparatively speaking, boring. :) When was the last time you heard about a "screaming syringe", a "kinked pen", a "failed injection site" ?

    When I first joined CWD one of the funniest posts I read was how someone's teenage daughter placed a screaming pod placed next to the phone while she was talking to customer support to get a new one.

    Of course this post has nothing to do with anything, but I did get 6 hours of continuous sleep last night and my DS's numbers were steady with no alarms. So life seems a little brighter today. I hope everyone enjoys their Saturday!
     
  8. Sarah Maddie's Mom

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    Who cares what others think of the pump your CWD is using?

    What? Are we all 14 years old? And no, "newbie" argument please, that one is totally specious. Everyone just want to be "Right". Well, there is no "right".

    Honestly, folks who feel they need to "defend" their pump choice should consider getting a new hobby.
     
  9. rgcainmd

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    And people who feel the need to constantly say negative things about the pump a parent has chosen for their child should do the same.
     
  10. hawkeyegirl

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    Here is the thing, I think. There is a much bigger difference between the Omnipod and tubed pumps than there are between the various tubed pumps. If our t:slim kept failing and screaming and being generally unreliable, I'd switch to Medtronic or Animas, and wouldn't really think twice about it. I like t:slim the best, but it's not t:slim or shots for us, and the features I like on it aren't a huge, huge deal.

    For many (most?) Omnipod users, it's tubeless or nothing. That is the huge, overriding advantage, and no other pump has that. So many (most?) Omnipod users were willing to put up with the absolute nightmare that happened last year (and the one other absolute Omnipod nightmare I've seen on this board years ago), because there was no other appealing option for them. The system was absolutely unreliable for a prolonged period of time last year. And people love it enough that they stuck with it. If I experienced 1/50th of the issues on our tubed pump that folks were experiencing with Omnipod, I would have said "Eff this noise" and never looked back. Omnipod users are EXTREMELY loyal, because generally, if you use the Pod, you use it because it's not tubed. Period.

    So, while you might consider reliability the most important feature in a pump (and frankly, I do too), and can't quite understand why someone wouldn't (neither can I), there are plenty of folks whose threshold in that regard is lower than yours and mine. (And for many of them, it's their kids who love Omnipod wholeheartedly, and they're willing to deal with the issues to make their kid happy.)

    Back to the original comment that made you mad. I do think it's true that Omnipod, even when it works well, is probably not as reliable as tubed pumps, and that is not a knock on Omnipod at all. It almost CAN'T be. With Omnipod, you are replacing the mechanism of the pump every 3 days. That mechanism is intricate, has been boxed up, warehoused, shipped and stored, and if any of the conditions along the way were not optimal, that mechanism can be damaged. That mechanism also has to be manufactured relatively cheaply, because it is disposed of after 3 days. Every time you put a pod on, you run the risk that it has been mishandled or stored improperly, or that there is a manufacturing defect. Compare this to an infusion set, which is essentially a piece of plastic, surrounded by tape. Sure, there could be a manufacturing defect (but even that is MUCH less likely, because it's so basic), but it would be hard to mishandle or store improperly, because there is nothing to it. Now, of course with tubed pumps, the pump itself can malfunction or break, but that is no more or less likely than the PDM itself malfunctioning.

    I say all of that not as a slam on the Pod. It's a disadvantage, but again, the Pod has more than one advantage that is COMPLETELY unique to that system. For Pod users, the advantages outweigh the disadvantages, and they are generally so loyal that the get quite peevish when you point out this disadvantage. I will say that if I had not seen the prolonged instances of bad pods over the years, and had not seen the cluster-you-know-what surrounding the rollout of the new pods, it's possible that the Pod would be our first choice pump. But, like you, I place reliability at the top of my list. It's why I waited a year after the t:slim came out so that I could see if it was holding up for people. And as someone who actually experienced the nightmare of pod after pod after pod being terrible, and little hope that they could send me a box of good pods, I simply can't trust the system without a backup tubed pump, even after they fixed that problem. It was too prolonged and too incompetently dealt with, and it has happened before. But it is a testament to the Pods advantages that I don't think they lost many users from that debacle. Truly, it shows how great its other features are.

    ETA: I honestly think "Cut the Cord" is the way to go. Get the tubed pump, pay $199 OOP for the PDM, and you have the best of both worlds (and a back-up pump from day one). It's how we got our Omnipod system, and now that I believe we're out of warranty on it, I have to look into whether or not they'll let us do it again. Hmmmmmm.
     
    Last edited: Jun 28, 2014
  11. rgcainmd

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    hawkeyegirl, thank you so much for saying this is in the way you just said it!!!

    I think the reason why I (and maybe some other parents whose CWD is using the OmniPod system) feel so defensive when it comes to the OmniPod is not because I feel the need to defend the OmniPod itself, but I feel the need to defend the fact that I chose this particular pump for my daughter. To everyone I've offended or pissed off or whatever by posting my "defense of the OmniPod" comments, please remember back to when you and your CWD were at a point in time similar to where my daughter and I are currently. I think I speak not only for myself, but also for some other new OmniPod parents (and some other parents who have recently started pumping regardless of the pump they've chosen) when I say that I have this understandable (and perhaps somewhat irrational but understandable nonetheless) need for reassurance that I've done "right" (even though, as Sarah pointed out, there is no "right") by my child. I wish I had every confidence in the world that I've made the best decision possible for my child, even though I know that this level of confidence can ironically only be had in hindsight and that this confidence is, at best, something that is likely only temporary in light of the fact that my child's needs will change over time. But when I read over and over other parents' comments about the OmniPod being "unreliable", "not as reliable as a tubed pump", or just a major pain in the ass in general, I often end up feeling as if (despite the many hours and days of research I put into this decision) the decision I've made to go ahead with the OmniPod was a poor one indeed. I realize on an intellectual level that negative comments made about the OmniPod are not being made with this goal (me feeling as if I didn't do the best thing for my daughter) in mind. But what someone believes on an intellectual level is often very different from what someone feels on an emotional level (in their gut, in their heart of hearts). And when this involves someone's efforts to manage their child's T1D, I believe my last comment rings especially true.

    So I hope that what I've just said explains why I lapse into defensive mode whenever I surpass my particular comfort level of the day after reading enough negative comments about the OmniPod (regardless of how true those comments may be.)
     
  12. rgcainmd

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    In the extremely unlikely event that you all have not heard quite yet enough from me over the the past few months, much less in the past 24 hours, I wanted to address hawkeyegirl's ETA about "Cutting the Cord".

    I had very much wanted to obtain my daughter's OmniPod via the "Cut the Cord" program on the advice of mmgirls, hawkeyegirl, and quite a few other parents whose names I cannot recall off the top of my head, in order to have a traditional tubed pump for back-up. I still believe this is very sound advice. As I'm sure you're all aware, someone has to be using (or at the very least, have in their actual possession) a tubed pump that they obtained via prescription from their endo in order to take advantage of the "Cut the Cord" program. The OmniPod is the first and only pump my daughter has had, so I thought that "Cutting the Cord" was not an option for us. But then mmgirls (what a brilliant and devious mind this woman has!) pointed out that I actually could get an OmniPod system via "Cut the Cord" if I first got a tubed pump via a bonafide prescription from our endo. Why didn't I think of that?!?!? My daughter had (and still has) absolutely no interest whatsoever in trying a tubed pump. (No offense intended towards all of you who are using a traditional, tubed pump.) But why not get our insurance to cover a tubed pump first even if we had no intention of actually using it first before starting on the OmniPod (which we could get by paying the $200.00 out-of-pocket cost via "Cut the Cord")? So I did a lot more research and decided to go with the t-Slim as our tubed pump, then get a "Cut-the-Cord" OmniPod. To make a long story a little shorter, we told our CDE that we wanted to move ahead with getting the t-Slim. Her response was to tell me that this was not a good pump for a child my daughter's age (11 years old). When I told her that I wasn't planning to have my daughter actually start with this pump right away and that I wanted to have it as a "back-up" pump in the event that the OmniPod did not work out for us, she told me that our insurance company would not cover both. I tried to explain to her that I wasn't expecting my insurance company to cover the cost of two different pumps and that I would be paying for an OmniPod PDM out of my own pocket. Then she said that our insurance company would not cover the cost of supplies for two different pumps. I told her that I realized this, but that my insurance would cover the cost of supplies for one particular pump at a time. I guess I still couldn't get our CDE to understand what I had envisioned doing, because she essentially kept repeating what she had already said. In the meantime, my daughter, who had been sitting there patiently up until this point, started worrying that she wasn't going to get a pump ever, much less two different pumps. My daughter blurted out "I don't even want that other pump, I want an OmniPod", which effectively stopped the hopeless interchange between myself and our CDE. Which was not necessarily a completely bad thing, because I doubt I would have ever been able to convince our CDE to see our side (i.e. my plan to get a t-Slim and an OmniPod). I doubt our CDE would have gone along with it even if I had chosen a more "child-friendly" (in her eyes) tubed pump like the Animas. My daughter's desperation to move ahead with the OmniPod right then and there was beyond palpable, and I knew that after being reassured numerous times that this very long-awaited appointment was her OFFICIAL PUMP APPOINTMENT there was no way I could expect her to wait even longer while I jumped through even more hoops to get a tubed pump first, OmniPod second. So I caved and went ahead with the OmniPod only. (To be perfectly honest, I was so burned out after all the work it had taken me to get them to "fast-track" us to pump start 4-1/2 months after diagnosis that I didn't think I had enough steam left to take on what would have undoubtedly been another battle.) So that is why we have an OmniPod only with no tubed pump for back-up. I hope this also helps to explain why I have such a strong need for reassurance that I made the best choice I possibly could have made for my child, all things considered.
     
  13. Michelle'sMom

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    Over time, I think you'll find this need for reassurance/confidence in your choices applies to almost everything with managing T1. We can't do this job without confidence in our own choices. The problem is, there's no one size fits all. Artificial sweeteners or no? Additional meds (in combo with insulin) or no? Supplements or no? Different ideologies concerning foods/meal plans? The only thing we can do is research as much as possible, make the decision & hope for the best. If it turns out not to work, there are other alternatives. They may not be as convenient but we do have choices, & we all have to decide what works for us. Ultimately, the opinions of others don't (& shouldn't) matter.
     
  14. moco89

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    rgcainmd,

    The best advice I can give is "don't look back" with your decisions. Just handle the problems that occur objectively.

    Everyone who pumps needs some sort of long acting basal insulin as a back-up, such as Levemir/Lantus (I don't actually have any at my house--but I am an adult with T1 so that's *my problem*). If you encounter some sort of problem, certainly you would know when to switch temporarily to injections.

    For what it's worth, I was a pod user from June 2011-February 2014, and I absolutely love the pod, to this date. I rarely had failures and none were significant. But, apparently it is the luck of the draw (or box). In the end, I lucked out.

    If things go wrong (for whatever reason), things generally can be fixed with respect to pumping. Injections can be used for a short period of time, until a letter of medical necessity from a physician is provided to the insurance company, for processing of a new pump. This takes time, injections are considered by some to be inconvenient, but in the end it's only temporary and can be fixed with some sort of an alternative.

    While this is not completely reassuring, I can assure you that if issues occur, there is always some sort of an alternative that can be worked out. Most importantly, don't look back. It's not healthy and it's a waste of time/productivity.
     
  15. Sarah Maddie's Mom

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    Here's my measure of a successful D decision: "Is my kid happy? Have I given her a tool that makes HER life easier/safer?" That's it. No one else's opinion matters and no amount of negative comments about her technology matters one bit. It matters not one bit. Period.
     
  16. funnygrl

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    The problem with the super bolus without using it as a "fill cannula" is you don't want insulin you borrowed from the basal being counted toward IOB, as it's not on board. It's basal. And you'd rather not have it counted as bolus insulin for tdd purposes.
     
  17. rgcainmd

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    moco89 and Sarah, thank you! And thanks to everyone else here on this Forum because you have all been a huge support since my daughter's diagnosis. Sarah, you're right: my daughter is happy with the OmniPod and her BGs have been steadily coming back into range since I buried my head between the pages of Pumping Insulin and followed John Walsh's instructions on how to adjust doses about a week ago. A happy, healthier daughter is the only and most important thing. I'll try not to forget that.
     
  18. Melissata

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    What you explained about your daughter is the exact reason people stick with the pod even if there are issues, especially those that have never used a tubed pump. Almost everyone has issues, but they are intermittent for most. It is unfortunate that your CDE wouldn't accept that what you were proposing was a very sound idea. As others have said, it will all work out. We were able to get my daughter a tSlim pump covered with the help of the endo, while her Omnipod was still in warranty, just as Stacy was able to do with one of her kids when they were having issues. It did take 3 months to do so though, but that was just our BCBS and the supply company not wanting to ship us a pump and just hope that they got paid in the end for it. Most insurance companies have a different process than BCBS. Hopefully your daughter continues to have smooth sailing with the Omnipod, but that CDE could be the one going to bat for you to get her onto the tSlim if she every does have too many issues.
     
  19. mmgirls

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    Did your dd have to do a saline start with the Ping? how did that go?
     
  20. mmgirls

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    This is a problem I have with some medical professionals. They should not assume we don't know what we are talking about and do some research, advocate for us when we have already done all the footwork, and are tired and need a little help.
     

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