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Pump start with OmniPod

Discussion in 'Parents of Children with Type 1' started by saxmaniac, Mar 20, 2008.

  1. saxmaniac

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    This is mostly a rant, but if you're starting on the pod maybe it can help, especially at the end.

    Our pump start has felt like a disaster. We've been barely able to even begin basal testing, because he's always 200+. (I've gotten exactly one evening of being in range at night that I could try, not enough to go on!) I knew that it would be a tough and a few weeks to adjust things, but we simply haven't gotten anywhere yet.

    Take the last few days. Alex was running high. Correct, correct, correct, and he's still not really coming down. He comes down to around 200, which indicates the site is working, but then shoots back up, so I think maybe the basal is off. The ketone meter reads 0.1-0.3, where he always is.

    We're a little over the 2-day mark on the pod, so we suspect maybe a site age problem and do a site change. Use fresh Novolog just in case. Put it on his butt, which worked really well a few days ago. Again, no difference - he's still running high, the corrections are taking him down a bit. So we increase the basal. Correct, correct, correct, No change. Increase basal again. Temp basal. I read the reports, and his TDD has more than doubled since last week, from 5ish to around 12, and he's still high.

    We are poking the kid pretty much every single hour day and night. I feel terrible. At 5am Wednesday, I get a 0.9 on the ketone meter, the highest we've ever seen. I break out a syringe and give him one unit. This finally brings him down below 200 (well, below 100) and clears the ketones immediately.

    I call the doc and he advises us to increase the basal by .05 and monitor. Monitor monitor monitor. Great, that's done nothing already. I need to do something.

    But the shot worked. How can the site be good and bad at the same time? I hope he'll finally stay down there, but after breakfast he's 300 again. Finally, I call my wife and say just do another site change for the heck of it.

    She pulls the old pod out and the cannula is kinked twice, but there was no occlusion alarm. We replace it around 2pm. The corrections are working a little bit better now, but now we're back to where we were the day before: a good pod, but still bouncing back high. And his basals are back to where we started at, even a bit higher.

    I call Insulet, and discover that when the cannula is kinked, you can get a partial blockage. This kind of blockage can block the basal because it's small, but larger boluses might go through at a limited rate. That seems to explain it.

    Okay, this is almost making sense. Of course, his basal still seems too low, so we have to put in a correction pretty much every 2 hours to try and keep him out of ketone territory.

    Now, insult to injury! This morning I'm reviewing the basals, while Alex is sleeping. I accidentally press "Enable" instead of "View" and PDM tries to enable the basal, which it can't because Alex is on the other side of the room. After it fails, it decides it must deactivate the pod and there's no way to cancel it! I just did a site change a few hours ago, and it's finally working, and now I have to change it again!! I pull the batteries out and reboot, but t still says it needs to deactivate the pod. Helpfully, it beeps every few minutes.

    No way I'm doing this now. I put the PDM in the drawer, so it can't screw with the pod... I'm paranoid the wireless range, normally about 2 feet, will magically increase 100 feet now that I don't want it to. Just to spite me.

    So that's where I am: a bad site and an apparent basal increase, plus a good site and lobotomized PDM, all at the same time.
     
    Last edited: Mar 20, 2008
  2. frizzyrazzy

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    Hang in there Scott - the first weeks with a pump are trying at best. It IS like starting over. I told Beth already that when the angled sites kink they generally do still allow insulin to go through, and that's good and bad. Good because you never really stop, bad because you never really know if a site is truly bad. And for what it's worth, Ian increased his insulin considerably when he started the pump. We had about 2 weeks of really bad numbers and eventually it all sort of clicked together.

    I have no clue where to go with the fact that you can't stop a change to the pod - that's a little weird, IMO. The PDA and changes you make should function independently from the site just as a traditional pump does. Odd. Did you call Insulet on that problem and what did they say?

    But the big thing I want you to remember is that in a few weeks all of this will seem like nothing - you just have to get few the first couple of weeks. Trust me.
     
  3. EmmasMom

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    Yikes! You are having a bad pump start. :( I'm sorry!

    I'm not that familiar with the Omnipod so I don't have much advice, but I will say that location is a really big deal for a site. I see that he has it on his lean arm in the pic and maybe it's hitting muscle and kinking? We have a few spots that just don't work for pump sites because there's not enough padding and if the teflon cannula ever bumps muscle it will bend.

    Hang in there! The wireless thing seems kinda scary to me too, but I'm sure you'll get the hang of it. Do you really have to pull out a perfectly good pod just because the PDM is confused? Let us know if you figure out a way to get around that.

    A big increase in insulin needs is not uncommon in the first couple of weeks on the pump. It will get better!!
     
  4. saxmaniac

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    That's good to know, because I didn't expect this at all. Increasing it so much feels like I'm doing it wrong, I sort of believed that you had to decrease or stay steady once you go pump.

    They said change the pod. It would have been nice for them to admit it's a bug. They offered to send a new pod but I don't know if they did so.

    The wireless thing is annoying at times - it really expects you to always be in range. It seems to be designed for people who are self-managing and thus in range of themselves. For us, 95% of the time I'm using the PDM to review things while Alex is off playing somewhere. So the wireless really trips you up. Oh well, I just have to get used to it.
     
  5. EmmasMom

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    This is exactly what we found using "wireless" cgms on Emma. She ended up wear the receiver on her waist 90% of the time because it worked so much better that way. Very frustrating.

    Again, hang in there!! It's a big transition but it will get better!
     
  6. Lee

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    2 things:

    They started you at a lower Basal on the pump since Lantus stays in the system up to 4ish days - that is why the baslas are to low. You will get those adjusted - and readjusted- and again, and again :D

    Also, the kinked site problem is my biggest enemy! How much insulin went through? Should I give her a full correction? Partial??? HHMMMMM....pull my hair, or just have a drink and hope it all works out? Using I do 3/4 of the correction and test like mad!

    Hang in there - he will love the freedom of pumping- it will happen soon, I promise!
     
  7. saxmaniac

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    The arms sites have been good so far - when we take it out the cannula is fine. It's just that one butt site had the kink. He's got plenty of padding there so it must have been some other factor like him sitting on it. I'm kind of scared of only having 2 viable sites.

    Thanks for all the kind words... believe me, I need a pick me up!!
     
  8. Kirsten

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    I have a little input on this. Generally, when you're trying to program something to the pod (changing basal, giving bolus, etc.) the PDM will look for the pod. If it doesn't find the pod, it should ask you to try again. At that point you should move closer to the pod and the PDM should pick up the signal and continue whatever action you requested. If the PDM can't find the pod even when you've moved it closer, the PDM will find a communication failure and you must change the pod. It may be that your "good" pod had a communication failure or you didn't move closer to the pod to pick up a signal.

    Insulet has always been great about replacing defective pods. I know that it is extremely frustrating to start from scratch again.

    I agree about the sites. Some are more problematic for various reasons. We use lower back, tummy, and upper thigh for a total of 8 sites.

    Feel free to PM with any Omnipod questions.

    Kirsten
     
  9. Lindy

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    Sorry to hear you are having a rough start.. I wasn't exactly sure what you meant with the wireless problems.. You do not need to have him close to you to review anything on the PDM - that can all be done without your child even present. The only time he needs to be around is when you need to bolus for a meal, snack or high, changing basal rates, or changing pods... Then the PDM needs to be within 3 ft. I'm not sure why the pod was deactivated... but it may just be in some confusion regarding the system set up... Our children's hospital accidentally deactivated Cooper's pod when they went to download the info - grrr I was not happy, but it was a mistake. I hope that things smooth out and become a bit easier soon - picking spots for site locations can be tricky! We have had some kinked cannulas too.. Finding the correct basal rates was easier for us because we had the CGM... I know that many people have challenges switching over to a pump. So far my biggest frustration is higher numbers after a site change... still working on that one! Hang in there!
     
    Last edited: Mar 20, 2008
  10. saxmaniac

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    That's just it. I didn't want to change anything, I was just reviewing basals, and programming a new one for later, but didn't want to activate it now. I think accidentally pressed enable, and now there was no way to cancel out of that.

    Of course, it was 5am so I probably just messed up somewhere. I'm not very keen on trying to reproduce this at the expense of a new site change, so if anyone can tell me exactly what I did I'd really appreciate it!

    So next time this happens, I have to go find Alex, let the unwanted change go through, and then undo it? Hopefully the new mistaken basal won't be 10u/hr. Ugh.

    A similar problem, but less expensive, is when you first turn it on. It always tries to find the pod. Again, nearly all the time he's not there with me. But, this seems benign - I can press "skip" with no problem.

    Are there any other places where it forces a pod change?
     
  11. Kirsten

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    Usually it tries several times, before alarming. When it can't connect it gives you instructions to move closer to the pod, so I'm guessing that there actually was a pod error. If the pod was OK, the basal change should have gone through and then you could have changed it back. Keep in mind that the PDM is really designed to be used by the person with D and not by a parent. So remember to be in range when you want to make changes. You CAN view/edit basal programs, settings, and history without being in range. You cannot change a basal program that is active.

    At the end of 3 days, you must do a pod change. If there is an occlusion alarm, you must do a pod change. Most pod errors will force you to deactivate the pod.

    Kirsten
     
  12. saxmaniac

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    That part I got.

    I think when it asked me to move closer, I ignored it, because I didn't my mistaken button press to take. I figured it would just give up (like it does when you first turn it on), and not totally freak out as it did.

    I have to remember more to not make any mistakes when the pod is not in range.
     
  13. Kirsten

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    I don't think you'll make that one again.;)

    GL!

    Kirsten
     
  14. kaismom

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    Thanks for this thread, I'm so sorry it sounds exhausting. I have not experience to offer but i'm very interested. I'm worried because we are trying to choose a pump, really interested in the pod and Kai is so skinny. There is just no fat on him. We do shots in arms and thighs he hates bottom and tummy is just skin. We are trying to add calories so we have some padding for the pump but yikes if fat is a requirement for good pumping we are in trouble.

    Good luck I'll be interested to hear if things get better for you.

    Aimee
     
  15. CC'sMom

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    Scott, I'm not sure what you did that caused the pod to deactivate. But if it was a pod error, look under the Alarms heading and see what the code is. As far as bent canulas, make sure the skin is pinched up when while you press the insert button. That should help the canula get in correctly. We had a few bent canulas in the beginning too. But they are very few and far between now. I'm no help on the basal setting. Our doctor told us what to set and he was right on the money. IT GETS BETTER! I PROMISE! Hang in there and feel free to pm or ask questions here.
     
  16. saxmaniac

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    Aimee, don't read too much into it, or let it dissuade you from looking. I'm only ranting about the bad things. There are lot of positives and they don't outweigh the problems yet, by far. Most I expect is just learning curve. Alex is pretty skinny too (42lbs), and his stomach is as flat as a board, but his arms have been great sites so far. We're trying to test out different sites. Insulet says you should be able to anywhere you can "pinch an inch" for a site.

    Holly, I forgot to add that Insulet support suggested we pinch a bit on insertion. We'll try that next time!
     
  17. vettechmomof2

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    Kirsten answered things really well for you so am not going there to much but wanted to say a couple of things.
    You can change the basal settings in the pump and SAVE but not enable right away. I have hit enable and did not want to was able to back out of there easily. Just go back to change the basal again when near the pod.
    Boluses, yes you need to be near. Otherwise I tunr it on all the time when she is not near and have no problems with it. It will look for her but go about with my business.
    Do not be afraid to call Insulet with ANY problems or concerns about things. They are great with helping.
    AS for the kinks, my daughter is alos very petite and is heavily muscled. We like the arms and belly. We do not use the thighs and now we save the butt for the cgms but she used to love the butt for placement.
    I do not fully remember our amounts of insulin used but we have to normally change basals about every 2 weeks. THis week we have done it twice do to a growth spurt.
    Good luck and I hope and think it will get better for you.
    Allene
     
  18. mom2cjh

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    We have had the Omnipod since Dec. 2007. Have not had any time when the PDM deactivated the pod without us wanting to. Everything can be reviewed without your child near by hitting skip. Can check all basal, bolus, carb, BS history. You can update correction and carb factors also but NOT change the basal rate. If you attempt to change the basal rate it gives a message that it is not allowed...if you still want to you must then go near your child...hit suspend insulin first for least amount of time...then go back to basal and adjust #....then go back and resume insulin delivery. Hope that makes sense. Hang in there. Right after starting my son got a cold and his #'s went crazy then back to normal. Then a month ago over a period of four days his insulin usage per day went from 6 units to 14 units and has stayed that way for now. Getting to that point was A LOT of basal and bolus changes and A LOT of high #'s. I couldn't believe so much had changed so quickly...but it can happen. During that time I also blamed A LOT on bad pods/sites and changed them (which they replaced); however, now knowing that his insulin requirements have stayed higher I don't believe it was always the pod just his body/needs. Just keep good records. Our endo and nurse have be absolutely wonderful. Talk to them daily when things get crazy. Best wishes.
     
  19. frizzyrazzy

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    Here's my unscientific opinion - it seems like the kids who were on small doses of lantus/log end up increasing on the pump. something about the way the lantus works in their bodies makes them very very sensitive to the log, so then end up with a masked low dose. Then once the lantus is out of the equation they end up taking a much more normal amount for TDD. That's totally what happened with us and it sounds like for you too. Remember, less log isn't necessarily better. I found it comforting to go and look what a normal TDD was for a kid Ian's size and then say "oh gee, he's still way within normal" (check john walsh) because I felt exactly the same - like I was working backwards. And I think that most of us don't really express how frustrating the first few weeks really are because it's sort of like childbirth, bad at the time but quickly forgotten, and we hate to make it sound worse than it is and scare people off. In the end, pumping is soooooo nice. It's just getting past those first few weeks. And in many ways pumping is more work for ME (and you) but so much nicer for the kids.

    what would make this the best item (for kids) is if they came up with a way for the kids to wear a tiny pump that actually controlled the pod vs the PDA controlling the pod. so 3 parts vs 2. The pda which had the all the nuts and bolts, a mini tiny brain that sent messages off to the pod and then the pod.
     
  20. twodoor2

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    Elizabeth didn't go on the Omnipod, but I think most "pumpers" or parents of "pumpers" can relate no matter what pump it is. There are always challenges in the beginning. It took a good few weeks to get the numbers looking normal for us as well. Whenever you change an insulin regimen, no matter what it is, going from NPH to Lantus, Lantus to Levemir, Lantus to Pumping, tethered to untethered, etc. . . it would be a miracle if it would go perfectly, especially in a short period of time.
     
    Last edited: Mar 20, 2008
    vettechmomof2 likes this.

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