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Omnipod- love it or no way?? appreciate your feedback

Discussion in 'Parents of Children with Type 1' started by jkrjk, Jan 23, 2014.

  1. jkrjk

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    My daughter (9) is getting ready to start the process of choosing a pump- and the omnipod really appeals to her for obvious reasons. I am just trying to get some feedback from "real users" since its hard to just rely on info from their site since its all so positive. :)

    Please tell me the good and bad experiences you have had… really wanting to know more about the actual product and be as educated as I can be going into our meeting with her diabetes team. THANK YOU in advance for any input… I am so thankful I found this forum with so many resources and people who know MUCH more about this than I do.
     
  2. MomofSweetOne

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    We have a Medtronic pump (2.5 years) and an Omnipod (.75 year) that we got through the Cut-the-Cord program. Given a choice, I would absolutely do the same thing again. My daughter prefers the Medtronic for the winter, but last summer she wore the Omnipod non-stop. There are things we like better about each pump and things we dislike with each pump. .

    No tubing - is sometimes a positive, but it does leave a large lump under the clothing that can be noticed more than tubing. My teen finds the tubed pump less "obvious" than the Omnipod because it doesn't create bulges. (Tubed pump looks like a cell phone or something.) The freedom for swimming, kayaking, etc. during the summer without reconnecting to bolus basal is wonderful.

    Filling - I prefer the Medtronic because I fill it to 300 units and change the reservoir as necessary. Estimating insulin needs for 3 days for a girl in puberty with insane increases and decreases in needs adds more stress to my life.

    Insulin Record - Medtronic wins hands-down. At all times, you know how many units are left. On the pod, it only tells you 50+ until it gets below 50.

    Alarms - Medtronic's are too quiet, but the Omnipod is so loud it is embarrassing to teens. It alarms frequently with failed pods, and too many in a short amount of time sends my daughter back to the Medtronic.

    Programming basal - Love the Omnipod's ease. Medtronic is a pain.

    Basal profiles - Omnipod has 7 basal programs, Medtronic only has 3. I'd love 10.:D

    Temp basals - Medtronic's can go for 24 hours, so it was part of our bedtime routine to look at basal and adjust. We had problems with highs initially with the pod because we forgot the temp basal kicks off after 12 hours. Once I started to make use of the 7 profiles, I now love the ability to change the profile AND temp basal.

    History - Prefer the Omnipod because it has record of all insulin use, including temp basal changes. Medtronic shows no record of temp basals on the pump once they're turned off, so you have to go to CareLink if you can't remember how much the temp basal was for.

    PDM - has been forgotten when going out for supper over an hour away. Fortunately, my husband was able to scrounge up a syringe in the glove box. We must've had insulin along as well. (For Medtronic, you can draw insulin out of the reservoir in a pinch, but you can't with the pods.) There's A LOT to be said for a life-saving device being attached to their bodies and not lost when going through the spacey stage in early teen-hood.

    Clock - My teen misses her clock when she's not wearing Medtronic.

    Button-pushing - lots more with the Pod than Medtronic. I thought I had her bolus ratios changed for camp last year, but when I went to reprogram them at the end of the week, I discovered I must've missed a confirm button or something as they were all her normal settings.

    Customer service - Medtronic's pump CS is ok (I detested working with their CGM customer service), Omnipod has been good about replacing their failed pods, but we've been on hold for 45+ minutes at times. I haven't called recently, so I don't know if it's improved.

    Insulin waste - with the amount of pods that fail, this is HUGE. Omnipod tells the customer that they need to sent in a receipt for reimbursement, but ours are under a copay. That reimbursement won't buy a replacement bottle nor do I think our insurance company should be paying for the amounts of insulin we've losing due to defective products. There is waste with how much is left when the pod expires, but Medtronic has tubing waste, so I figure it evens out between the two.

    Pump failures - It is nice to have BOTH to slap the other one on fast when the other isn't working for whatever reason. I'm not particularly fond of reprogramming the PDM in the middle of the night when it decides to PDM error, so the Medtronic goes on, the Medtronic is being replaced so the Pod goes on. It's easier than Lantus or two-hour-shots of bolusing basal while waiting for a replacement pump.

    IOB - I prefer Medtronic's curvilinear formula rather than Pod's straight division. I find it more accurate for how my daughter's body uses the insulin.

    We've never used the PDM meter or linked meter with either pump.
     
    Last edited: Jan 23, 2014
  3. Sarah Maddie's Mom

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    Not sure what you mean by "for obvious reasons"...

    Order the dummy pod, see how your DD likes having it on her and try to get your hands on the others at your endo's office. Much of picking a pump has to do with your comfort handling and interacting with it.
     
  4. swellman

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    The "obvious reasons" is the promise of no tubing hanging around and the remote communication and no need to have to be carried on or with the user.

    EDIT 2: As a 6 year user of the OmniPod on our son I have to say that it's not perfect. There are issues with failed pods. We've had a slew of issues but lately been in a good zone. In my opinion it comes down to tubeless and not having to disconnect in water. I would wager that we would have better control with MDI but the convenience of the pump far exceeds the benefit of MDI. We're currently sub-7 on A1c and if that changes I might change my mind. It's not perfect and there is a measurable amount of frustration with the device.

    EDIT 3: "Love it or no way" is a nonsensical question regarding a pump IMO.
     
    Last edited: Jan 24, 2014
  5. StacyMM

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    I'm in the "hate it" category. If you search this forum, you will probably see posts from me titled things like "I hate the OmniPod." That said, I still have one kid using it because it is the only tubeless pump on the market and that one positive is so important to him that he believes the numerous negatives can be lived with.

    Positives:
    It's tubeless

    Negatives:
    ~Failures happen often. I have two pods sitting in my "save up and call Insulet at one time pile" right now. I don't call individually because the hold time and customer service experience is so terrible that I can't face it more often. Those two are from the last eight days, which means we are a good stretch right now - I'd usually have 3 by this point. One failed with .05 units remaining in a bolus in the middle of the night. Which meant a site change in the middle of the night. Charming. The other failed during insertion, which meant we had to pull it and immediately change the site again. These failures waste so much time and insulin. We pull insulin back out but you never salvage all of it.
    ~Insulin on board is calculated in a linear way. My kids do not have insulin absorbtion occur in a linear way.
    ~Both kids had higher a1cs when they switched to the pods. My son's is still high and I want to add that his honeymoon ended while we were already using pods so I'm sure that impacted it as well. My daughter, after switching to the T:Slim, saw a huge improvement in a1c after a full three months on it (from 8+ to just under 7) while my son's is still over 8.
    ~The remote is worthless. He may as well be connected because it only communicates when we hold it right next to his pod. Anything more than a foot away and it fails to communicate and we move it closer. I really thought it was a PDM issue and not system wide but we've had to replace his PDM and the second one was exactly the same way.
    ~The button design on the PDM is weird. All of that space and they are all crammed into a circle of buttons and pushing them is awkward.
    ~It takes so. many. pushes. to do anything. Compared to my daughter's pump, the confirmation screens on my son's PDM seem excessive.
    ~Small reservoir. It's only 200 units and if you fill it completely, they suggest that failures are your fault. My thought is that if you don't want people to put 200 units in it, you should limit it to 180 and not claim a 200 unit reservoir. Unlike other pumps, you can't fill insulin separately of a site change so when you run out, you run out. My son's TDD is high enough that we can't get 3 days out of a pump even if a pod manages to last that long.
    ~Automatic shut-off at 3 days + 8 hours. Not an issue for us, usually (see complaint about 200 unit limit) but if he's sick or not eating a lot, that arbitrary shut down is a PITA. Let's say you have a pod failure at 5:30 am one morning. Three days later, it will turn off at 1:30 pm. Which means you need to change it before school because it can't be stretched that last 2 hours until he gets home.
    ~The software is horrible. I very, very rarely uplaod the pump because I hate it. We CGM so I wouldn't upload often, anyways, but I probably upload DD's pump 3 or 4 times more often than his. And the reports are not exportable to Excel. They don't want you to get the data into anything editable, is what tech support told me. I wanted to edit it so that I could send the endo just the info they wanted and I couldn't. I had to export a huge file, which the office couldn't open anyway. Insurance didn't love it when I was submitting 30 days of data for CGMs, either.
    ~Insulet will STILL not answer my questions about the PDM I sent in last summer. We were having issues that I am convinced was interference between the PDMs. They said it couldn't happen. When both PDMs failed at the exact same time, I sent one in for testing. Still nothing. They won't tell me anything. We would dose one kid and the other kid's pod would fail. One night, both kids got the same meter reading and same recommended dose even though neither had IOB and DD's insulin needs were 3 times DS's (he was still honeymooning). Then they both failed. If we were at a restaurant, one kid would have to leave the table and dose elsewhere, not returning until both boluses were completely administered. Same with the dinner table. Or the car. Or anywhere within 5-6 feet of one another. We even had issues at night when they were further apart (rooms are next to one another but they are probably 10-12 feet apart with the ways their rooms are set up.) which is ironic because their PDMs only seem to reach a foot...but they could cause failures 12 feet away. We would dose one kid and the other would have a pod failure.
    ~Pods fall off. Just randomly. And we use extra adhesive and tape, so it's not like we aren't trying to keep it on. My daughter's sites never randomly fall off - and that's with stuff like a pump being dropped and swining wildly in the air before she grabs it, or sites being pulled when she catches tubing on something.
    ~Two hour reminder. The PDM beeps at you after a site change and it keeps beeping until you clear it. So when you have a failure at 1:00 am, you know that you will also be getting up at 3:00 am to clear the stupid reminder. It's not optional and I hate it. It seems like a design feature that intentionally annoys users.

    That said, there are many, many happy podders in this world. It didn't work for us but that doesn't mean it won't work for you. It could be the perfect pump for your family. As much as I hate it, I might still pull her old PDM out for trips to water parks and the beach. I don't know that I'll be able to convince her (she hates the pod and started crying one night because she overheard a conversation and misunderstood it, thinking that we were saying SHE was going to have to wear a pod.) She wasn't keen on changing (I had to bribe her), but once she started on the T:Slim, she fell in love with it and never wants to change. If you are considering it, call a rep and try on a demo one. Have them show you the PDM and explain how to use it. As I said earlier, as much as I hate OmniPod, I am still a customer. That one positive is enough for my son. It may be enough for your CWD, too. You just never know...
     
  6. hawkeyegirl

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    We have an Omnipod system for our backup pump. We used it when our tubed pump met a watery death. I really thought that the remote would be our favorite feature, but was surprised that it didn't really make a big difference. As Stacy said above, the remote has to be so close to the pod, that he might as well just push the buttons on a pump connected to him. And if the PDM didn't happen to be near him when he was going to dose, he had to go get it, which annoyed him.

    For us, the big advantage of the Pod is not having to disconnect for water activities. We can make trips to water parks work with our tubed pump, but it's a bit of a hassle. (But worth the hassle, as we find the pod a bigger hassle in a variety of other ways.) For us, the cumbersome menus, the failed pods, the difficulty we had keeping pods attached to him, the small reservoir, the need to carry insulin with us, the expiration at 72+8 hours aren't enough to outweigh the benefit of having no tubing. People tend to have strong feelings about the pod. They like it a lot or they hate it. I'd trial it, along with a traditional pump and see what you think.

    ETA: I forgot one other "plus" in the Pod's column, especially for new pump users. The automatic insertion is nice.
     
  7. Annapolis Mom

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    Our 9-year-old has been on the omnipod for a little over 1 year and she loves it. The lack of tubing, of course, is the big deal for her. Also, not having to have the PDM (or whatever the computer unit is called on other pumps) on her person adds to her sense of freedom. We have had a few problems with the new pods, but not too many, especially when we pay really careful attention to getting rid of air bubbles. I think the new pods are very sensitive to even the smallest bubbles.

    One thing I have noticed is that most people love their pumps, whatever pump they choose. Once I noticed that, I felt much more relaxed about turning the decision over to my daughter.
     
  8. DavidN

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    For my son the tubing was a non-starter. He slept one night with a trial tubed pump and that was enough for him. I suspect we could have experimented a bit to make it work but he wasn't game. There are occasional periods of frustration with pod failures, but we're experiencing fewer of these. When we're in a bad period, my son will say he wants to go back to shots, but never brings up the idea of going tubed. The pod adhesive is rarely an issue for us.

    I'd be curious what people with experience with pods and tubed say about sports. For water sports, I suspect pods win hands down. For other sports, I don't know. We do well with pods. It's hidden on his belly or arm and we never think about it.
    I don't think my son would like the idea of carrying the device around full-time in a pack around his waste. I think that's how most do it. Functionally it probably works fine. There are times my son doesn't mind standing out for having D, but I don't think he'd want to wear the pump pack while pitching, batting, or running down the basketball court. Curious what others who can compare the two say.
     
  9. hawkeyegirl

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    Jack has played...let's see...soccer, baseball, basketball, tennis, football (both flag and tackle) while wearing his pump. For him, it's no different than kids who wear glasses during sports or something. The pouch holds it in place flat against his body, and you can't see it under his uniform.

    I don't know what we will do if he decides to continue playing tackle football. There will come a point where it's not safe (for him, or for the pump) to let him wear it during games or practices. He definitely needs insulin during football (due to adrenaline - I think we could disconnect during basketball, for instance, and be fine), so just simply disconnecting would be a mess of highs. I don't know if we could put a pod somewhere where it would be protected or not. He would definitely prefer that to a shot of Lantus (and so would I), but considering that he rolled over in bed one night and knocked a pod off of the backing, I worry about how it would hold up. I guess we'll just have to figure that one out when we get there.

    It's not that I don't appreciate the convenience of not having tubing. It's just that the Pod's downsides (for us) far outweigh that convenience. But still, I am very grateful that we have it for our backup pump. I cannot imagine having to go to MDI in the case of pump failure.
     
  10. ksartain

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    We've been on the Omnipod since the beginning of October. In these past almost-4 months, we've had 3 pod failures. We haven't used any other pump so we have nothing to compare it to.

    Christopher loves it. I love it. The wireless aspect is awesome. The insulin on board feature is great. I love the on-board food diary so if we're in a pinch, we can get some idea of how many carbs to bolus for.
     
  11. DavidN

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    I had always envisioned it going outside the clothing, sort of like a fanny pack. But if it's sleek and low-profile and can be worn under clothing then that's great. Another parent told me a story about his son who was up to bat, and the umpire held up his hands, "HOLD ON". Stopped the game. And said to him, "you can't wear that playing baseball!". I think he thought it was an mp3 player or something. He explained and the game resumed, but I suspect this wouldn't have happened if he were wearing it in a pack underneath clothing.
     
  12. KatieSue

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    My daughter is 17. We've only ever used Omnipod and we're almost to the 4 year mark. Yes the recent switchover and failures are a pain in the patooey. The failures do seem to have slowed down some and the hold times for customer service seem to be back to reasonable levels. We haven't really had any adhesion problems. Once or twice if she was swimming a lot and we didn't wrap it.

    She'll only wear them on her arms so they are visible most of the time. This doesn't seem to bother her a bit. As someone said above it's like wearing glasses just something that's there all the time and after a while you don't notice it. She occasionally decorates them with markers, or her friends do. She's lost/got stolen one PDM early on. She was at a food court, ate, kinda forgot about it and when they went back it was gone. Huge search but it never turned up. Since then it hasn't happened. She has a small clutch that she carries it in with all her supplies, ID etc. And it has been forgotten once or twice but it's become sort of a ritual before we leave the garage to go anywhere to ask if she has Philip (the PDM is called Philip).

    I'd definitely trial one to see how it feels on. Our Endo doesn't recommend Omnipod because he says we're one of the very few patients who have been successful with it, so there's that too.

    I will agree the software BITES. We were using a 3rd party software but for some reason with a new update it won't work correctly so we're stuck.

    All of the details Stacy lists above have happened to us at some point. And we've had frustrating moments but for us the good seems to outweigh the bad. I've asked her during the frustrating times if she want's to switch and the answer is always a resounding NO. So we make it work.
     
  13. Megnyc

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    I played varsity tennis for 4 years, skied competitively for 6 years, and ran varsity track (3000m and hurdling) for 3 years with a tubed pump. I wear the pump in a spibelt under my shirt for sports and during normal life I just clip it to my pants with the pump part facing in. If I am wearing really skinny jeans or leggings I usually use a spibelt and it is totally unnoticeable under my top. You probably couldn't find the pump on me even if you were looking for it. I do use the pod for water sports in which I will be totally wet such as scuba diving, swimming, and water skiing. For things like sailing and jet skiing, I just wear the tubed pump in a spibelt. I greatly prefer the tubed pump for everything except water sports.

    I think having both is truly the best of both worlds. Oh, and for sleeping the pump just lies loose in my bed or is clipped to the top of my pj pants and I never notice it.

    ETA: Also, probably doesn't matter for a boy but as a girl, wearing a bikini at the beach, the pod attracts way more attention than an infusion site. Especially, since the infusion site could be placed on the bum and no one would notice but the pod would create a big lump under a swimsuit bottom for a girl. I actually prefer to just hook up every few hours and bolus for missed basal if I am just hanging out at the beach because I hate the attention the pod attracts. I guess since boys swimsuits are much looser there wouldn't really be that problem.
     
  14. hawkeyegirl

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    Hee. No, he wears it under his shirt, always. You would never know he was wearing a pump, even if you looked for it. When he had a MM pump, I often didn't even bother telling the TSA he was wearing one, and they never noticed. (The t:slim sets off the metal detector, so I do now.)

    I suppose eventually he'll just want to carry it in his pocket, but for now, the pouch is the way to go. No fussing with it when he changes clothes or wears PJs. He just keeps it in the pouch 24/7.
     
  15. Snowflake

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    Our DD is almost 4, and has used Omnipod for 15 months. For us, most of the time, the good seems to outweigh the bad. But it's a close call.

    We love all the "obvious" convenience and design factors (some of which we feel are particularly important at preschool). But we do experience an absurdly high number of early failures -- in a good month, we'd see 1 or 2 early failures per month, but in the occasional bad month, we can average two per week. Those rates seems unacceptably high to me, so we have toyed with the thought of sacrificing the convenience, as well as my daughter's physical comfort with the product, to switch to another pump. We're not quite ready to throw in the towel yet. We have a great sales rep to hold our hand, and our recent experiences with CS have been pretty good -- for now, we're holding onto hope that these issues will improve.

    As we ponder these issues, I'm curious if anyone knows whether there are any publicly available studies comparing A1c outcomes with different pumps?
     
  16. Sarah Maddie's Mom

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    So basically you've been imagining every cool teen and fashionable gal who uses anything but the pod as dorking it out with a fanny pack? LOL. No, not at all. It's kind of hilarious actually imagining my hip, electric guitar playing, smart aleck, athlete 16 year old rocking a fanny pack. Not likely.
     
  17. nanhsot

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    My son typically slips it into his jeans pocket, sometimes you can see just a little tubing if you are looking for it but that's rare as his tshirt covers even that up. For sports and such he uses a spibelt. NEVER has he worn it where anyone can see it as your describe! He's much too cool for that, trust me!
     
  18. nanhsot

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    I'm sure this is a YDMV moment, but for some reason my son never needed corrections for adrenaline highs, in fact if he did correct them he ended up low after games. He was able to disconnect for tackle football and did OK, the combo of no insulin + high activity leveled him out. He did see adrenaline highs, but I can only think of about 2 games where he corrected at half time because he felt off, otherwise he just connected at the end, sometimes he'd replace missed basal but not always.

    One season he did a small shot of lantus (5 units I think, out of 35 total basal) during football season just to offset the time he was disconnected.

    To the original question about sports, my son has done rodeo events, tackle (high school) football, track events wearing a tubed pump. He does disconnect for watersports, not worth losing a pump over!
     
  19. jmg707

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    We are new to pumping (as of September 2013). My daughter (she's 8) loves the Omnipod solely because it is tubeless, it can be worn in the water and the remote makes it easy for adjustments. We don't have any experience with other pumps so, we might be a bit biased. That being said, we have not experienced any significant problems. No pods have failed, customer service has been fine via email, the device itself is manageable and fairly easy to use. We did do the dummy pod trial before starting and that was required for us to get approval for the pod from our endo team. If you are unsure, test it out. I would think most pump companies are willing to work with you initially to make sure you choose what works best for you. Everyone we dealt with at Insulet/Omnipod from the sales, insurance, delivery and training end were all very helpful. I think in the end it comes down to your preference and what your daughter is most comfortable with. Good luck :)
     
  20. Junosmom

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    We are very new to Omnipod use, and also started Dexcom G4 one week prior. My 11 yo son insisted that he would only try a pump if it is tubeless – so Omnipod it is. We started at the beginning of this month with both the pump and CGM.

    We’ve had three pod failures, all replaced by Omnipod. They were long beeps after one day of use. I found the customer support very good and was promptly sent replacements. On the last one, I was asked to return the pod for evaluation. Yes, we’ve had wasted insulin. Right now, he has low requirements, and we only put 100 units in, but still…

    We have to change every other day – Dr. orders to only use pod 2 days.

    We had one night of the highest he’s been (while diagnosed) and in retrospect, think it was due to a failed bolus after a new pod. (We’ve since learned about bolusing after a new pod to make sure it’s working.) I don’t yet feel we have the control we had with MDI, but I’m studying hard.
    We sometimes override the calculated bolus.

    We don’t use the PDM for BG readings. It reads low when out of range, and only agrees when in range. My insurance doesn’t want to cover the strips anyway, so we use Accu-Chek Nano and manually enter – a pain.

    His sport of choice is martial arts and he sometimes uses sparring gear – chest protector – that prevents placement of CGM or pod on the abdomen or buttocks. He is somewhat sensitive about people seeing it and prefers his leg. We use upper arm some.

    That said, my son brought tears to my eyes saying, “Mom, this is the closest I have felt to not having this disease.” It is more like being “normal” and definitely is less stressful than MDI around meal times.
    It’s not perfect, but I’m happy to have it. We don’t have experience with the others though, so I’m interested to read your experiences.
     

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