Ok so I am new here, but a quick intro. My daughter was diagnosed at 12 years old last Valentine’s Day in DKA with a BG of 993. She spent a week in the hospital between PICU and regular Peds. She has been on Dexcom G5 since March and on Omnipod with Novolog since November 3rd. Prior to that she was on Animas Ping from August 29th until we switched.
Now on to the problems. We have been having issues with the Pods leaking significantly. We put them on and day 1 is usually good, great numbers (after getting her back in line from a previous leak) and no issues whatsoever. Day 2 however we almost always get leaking at or around 50 hours (some have been sooner like the one today that made it only 36 hours), but that is when we actually see leaking on the white cotton. Prior to the leaking her numbers start climbing and becoming hard to keep normal. If I look at the Insight info on Glooko the graphs for 12 hours before and 6 hours after Pod changes are mostly all orange.
Now Omnipod has been replacing them anytime I call and when I ask them for help in figuring out what is going wrong they basically tell me that it is not me I am doing everything right, but after talking to her doctor and realizing their other Pod patients are not experiencing this I think it must be us. So, here is what we are doing and maybe someone else can see an issue.
First we do rotation using her arms and lower back in several places and never the same site two times in a row. (We have tried the belly, but is does not seem to absorb good and her thigh when we tried it came off prematurely) Then we wash the site with an alcohol prep pad, wait for it to dry and follow with Skin-Tac. Fill the pod, put it on her and make sure we press everything down good. Then insert the cannula, check it and done. Now we have tried both pinching and not pinching during the insert and also pressing the Pod in and not pressing it during insert and still have leaking. It doesn’t matter where we put it on her we have had leaking in probably 90% of the Pods so far. It is really messing with her average (right now it is about 191 for an average). If anyone has any thoughts or questions please let me know. Thanks so much!
First, welcome @finny1981! Our son, Liam, has been using the Omnipod since August 2016 and, although he’s only 4 now (diagnosed at 2), the only times we have experienced leaking is when he bumped against something that resulted in the cannula coming out. We were able to tell nearly immediately because his BG continued rising despite the bolus and corrections.
Could this be the issue with your daughter? Bumping against something that’s resulting in the cannula from coming out (which would explain why the white tape part starts getting saturated)?
The issue could be either a site that does not absorb well, or a loose pod/loose cannula. The first step would be to try to isolate which is the problem.
Do you see a raised spot after removing the pod? (right at the point the cannula was inserted, like a red dot)
Does the pod tape seem to be holding ok, but you are just noticing a leak? Or is it that the pod is not sticking well?
Do you smell the insulin, or is it just wet? Maybe it is from sweat and is not a leak, or do you know for sure the insulin is leaking?
Maybe on the next pod removal, carefully lift it from the back and see if you can verify that the cannula is actually in place before fully removing it.
Thanks for the welcome!! No it’s not coming out because we actually had that happen New Years day where the cannula came out and she skyrocketed to 479 and with that one ironically there was no wetness on the tape just numbers that were double up and reading high by about an hour after dinner. When the leaking happens we see her go from like 111 between meals to where she is running at about 180 - 200 and corrections bring her down very slowly typically taking a lot more insulin and then she just slowly creeps back up over a couple hours. Then bam she will start actually leaking onto the cotton. I don’t think she is bumping it (actually the one where the cannula came out on New Years she did catch it, but that’s the only time). Plus when you look in the window you can definitely see it in her skin.
I had a very similar problem several times a month recently, with damp adhesive after the first day and climbing blood sugars that seemed unaffected by repeated corrections, and with the cannula and adhesive firmly in place. Then I read about tunneling, a situation that happens mostly with Teflon cannulas in which the insulin backs up along the cannula to the surface.
I noticed the leaks were more of a problem when I gave larger boluses, so I started to reduce the amount of bolus I gave at any one time (and on the Omnipod, extend the remainder over half an hour). I started with 9 or 10 and worked down, and I’ve found 4.5 to 5 U is safe for me. I haven’t had any back-up leaks since then. You might give this a try. It’s a bit of a nuisance, but not as much of a nuisance as climbing highs and corrections that do nothing!
Another minor nuisance is that if you tell the PDM to deliver, say, 5 U, it may decide to give you more: see PDM fails at math? for the explanation. Good luck!
@finny1981, welcome to FUD! I am truly sorry about your daughter’s diagnosis.
There are many parents of CWDs in this community and I think you will find an incredible number of highly competent and supportive people around here. My son recently turned 13 and was diagnosed when he was 11. He is also on an Omnipod system. So we have a lot in common
Related issues to yours have been often discussed around here, and both @ClaudnDaye and @Eric are highly competent to help in the area! If insertion ends up being a possible issue, @Eric’s insertion method is particularly valuable to discuss with him.
You may want to introduce yourself in the Welcome thread! Looking forward to reading more from you.
You can see where the cannula had been, a lot of times yes it is a red bump, but not always.
The tape holds very well, the only exception is the bottom of the tape sometimes on her lower back if she is wearing yoga pants that she is pulling up a lot. The Pod appears to be sticking just fine as they are only able to be removed with baby oil most times.
Ok so as far as smell, yes there is always an insulin smell after leaks and very strong. Sometimes I will know a leak is coming because when she starts running on the higher side if I smell it has a faint insulin smell. I know then it is only a matter of time. I always try to wait it out, but have never had it not leak if it has an insulin smell.
I will definitely check when removing, but if I look through the window on a leaky Pod it sure does appear to be in her skin.
Yep, I agree with you about the smaller bolus amounts.
Hello @finny1981! Sorry to hear about your Pod issues. We understand how frustrating that can be. My partner EH has experienced the leaks, and following @Beacher and @Aaron’s tips on this have helped him eliminate the leaks (smaller boluses, pinching up and pressing down).
In our case as soon as we smell it we redo the site. It’s not worth the roller coaster that happens afterwards.
Also, on the advice from @Eric and @Millz we got the prescription changed to every two days instead of three, giving EH the option of switching out if there is a failure. With the every 3 days RX it felt like we had to persevere. Which was silly. Now we’ve got more insulin if we need it and pods so we can change when needed. EH doesn’t like sites on the back, and the thigh didn’t work for him either so we are rotating on arms and stomach. Stomach has been less successful.
I am sorry again for the frustration that I can imagine this causes.
Another thing that can help in general - not necessarily for leaks, but just to help them stay in place better - is to align them parallel to the bone. So aligned up-and-down on arms, parallel to the arm. Also up-and-down on the legs. But sideways on the stomach and back.
Did you notice any leaking issues with the Animas? What infusion length were you using with Animas?
I think what you are describing sounds like the classic “day 3 problem”. I have that on occasion. Day 3 isn’t as good as days 1 and 2. Like Kim (@TravelingOn) said, if you get the prescription changed to every 2 days it can help with the problem.
Welcome @finny1981, sorry to hear about your problems with the pods. I don’t have much advice since we use the Tandem system, but I hope you figure it out soon. We all know how frustrating managing diabetes issues can be. Especially when you know what you need, but the hardware is preventing you from delivering it.
I have a son who is about to turn 15, but was diagnosed at 12. Hope the advice you are getting helps.
