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Infusion Sets Leaking

Discussion in 'Parents of Children with Type 1' started by mamattorney, Jul 16, 2015.

  1. mamattorney

    mamattorney Approved members

    Apr 9, 2013
    About 6-8 weeks ago, I posted a thread about huge increases in insulin needs and it turned out to just be two bad sites in a row.

    We are now running into issues with her sites (Cleos) on a sporadic enough basis to be frustrating. I'm prompted to post because she was on an overnight service trip last night and I ran into her (I was volunteering with a different group of kids) and she was changing her site. She'd been high all day and corrections weren't helping. She touched her site and her fingers smelled like insulin. It was only the second day.

    So, I'm looking for advice. She is 12 and heavy into puberty so her TDD is high - around 80units without anything out of the ordinary. If we eat at a restaurant or (like she did today) go out for ice cream, the TDD can easily reach 90-100 units. Her correction factor is 1:25, and her carb ratio is @1:10, so each bolus is pretty big. Today, if she was high, plus eating an 80 carb lunch, her bolus would be 12 units - so that's a lot of insulin going in at once.

    Is that what is causing the leakage - just trying to put 12-15 units into her body at a time? I would think t:slim's slow micro delivery would help with that, but I don't know.

    Would it help to use a longer cannula? Or a different infusion set (no promises on that, she loves the Cleos)?

    I guess I'm just looking to see if this is "high insulin usage" issue or if this is just some quirk of her body. She doesn't use a huge number of sites - mostly thighs, sometimes belly. But I do make her rotate on those sites - switch legs, place next site away from past site, etc.
  2. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010
    We started having trouble with bad sites on stomach, so now we only use steel needle sites on the stomach area. We use a variety of sites, different ones for different body sites. Maybe a little bit of experimenting would help?

    As for the high TDD, it doesn't sound too outlandish. My DS is 13, TDD around 40-50, so not as much, but I expect it to go up before it goes down.

    The amount question would be a good one for your endo. That's a harder one, that depends more on her body.

    Good luck! I hope things smooth out for you.
  3. jenm999

    jenm999 Approved members

    Apr 30, 2014
    Can't comment on the TDD but can say we had a lot of issues with cleos and none now with insets. It's too bad because the engineering of cleos is great; they just don't seem to be reliable. For us the tubing would detach from the site itself, so the site and connector would remain on the body and tubing hanging loose with nothing on the end. We would also get highs without it fully detaching. His TDD was tiny because he was honeymooning so we never noticed an outright leak, but your problem sounds similar.
  4. Megnyc

    Megnyc Approved members

    Nov 8, 2012
    I think the thighs are really tough to put a decent amount of insulin into at once. I think I would first try encouraging her to try her belly more (and perhaps her bottom as well). Areas with more fat and less muscle. Also, you might try the 9mm cleos if you are using the 6mm. I think I might have an extra box of the 9mm and I'm happy to send you some if you want to try them. I like the cleos but I am years out of puberty so using significantly less insulin than your daughter. I tend to think the angled sets are better for large TDD than the straight in ones.
  5. misscaitp

    misscaitp Approved members

    Jul 26, 2007
    I've had the leaking insulin issue on both the OmniPod and the T:slim. OmniPod it happened very frequently. T:Slim I use 9mm cannulas, but I still have this issue (not as frequently), so I've come up with two possibilities:

    (1) Too much insulin is being delivered at one time, though I've had it happen with a 4 unit bolus, so I don't give this one much credit (with my body)


    (2) Anytime the tubing is pulled on, even if it is just little tugs over time, it may be slightly dislodging the cannula from the original placement--but not so noticeable to cause pain or a change to the appearance of the site. That slight dislodge would cause insulin to not be absorbed efficiently or lead to leaking.

    I know I tend to have "leaking" sites when its on my arm because of all the movements or on my stomach when my tubing gets caught on something; I've learned to avoid arm sites when I know I may have to do a lot of lifting or different movements with my arm (or even thights) to prevent the leaking from happening, and there's not much you can do for avoiding it with stomach sites, other than be careful not to have the tubing tugged.

    Also, the pure weight of the OmniPod versus a regular set would explain why it happened more frequently with me with that insulin pump.


    At least with me, I find that #2 generally explains why it is happening, maybe that is what is happening with you given that she was on a service trip.
  6. susanlindstrom16

    susanlindstrom16 Approved members

    Nov 29, 2012
    Can you try giving half the bolus at one time and waiting a few minutes to let it work its way in, and then giving the other half? And see if that makes a difference. I'm not familiar with t-slim, maybe thats what the micro delivery already does.
  7. mamattorney

    mamattorney Approved members

    Apr 9, 2013
    Thanks for the advice. It's all very helpful, unfortunately because it's not me wearing the pump, some of it will be hard to put into practice.

    I'm going to put all these suggestions to her and see what we can do. She'll probably tell me she doesn't want to switch sets or switch sites (for whatever reason, she loses sites on her "upper butt" most of the time, so she won't even try anymore. Something to do with the waistband of her jeans/shorts. Her thighs are so much less painful than her stomach, so I think that's why she gravitates to them.

    I'm going to give it the old college try though - maybe the incentive of not being high/changing sites early will push her over the edge to make some changes.
  8. StacyMM

    StacyMM Approved members

    Oct 22, 2010
    If she wants a story of someone similar, my 11 year old daughter was very, very loyal to the Cleos. We'd see numbers creeping up after two days and we'd be rotating the clip and checking the pigtail twist so often...so I started trying to work on testing a new set. She seems to do better on straight sets and in reading and talking to the pump person at the endo, the contact detach sets seemed like a good option. DD was adamant about not trying it. Manual insertion freaked her out, steel freaked her out, trying something new freaked her out. We talked about it often enough that she began to think about it on her own and started asking questions and asked to check one out (the office had given us samples.) In the end, I offered $20 for putting one in and wearing it for a few hours. Nothing else was said about it for a few weeks and then one day she asked about the bribe. I confirmed $20 and she announced she would do it. She just needed the time (and motivation) to think about it and realize how much trouble the Cleos were. After wearing one, she refused to go back to Cleos until the samples were completely gone...and then she asked every site change about when the next order was due. When we got the next shipment, she switched to contact detach and never looked back. She absolutely loves them and can't believe she didn't want to try one.

    No more high numbers after 48 hours, no more early site changes, no more Cleo fussiness. She started doing her own site changes once she switched (she tried with the Cleos and it was just too awkward for her) and loves that independence. If she has any questions for someone her age that uses them, PM me and I'll pass them along to her :)
  9. Mo1

    Mo1 Approved members

    Jun 8, 2014
    My daughter had problems with the Cleo. Sites not working, high numbers etc. We changed to Inset and had few issues. Now using Omnipod with no issues...

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