After five years of MDI, my 11 yr-old daughter just started on the Omnipod. First day and night were flawless. A couple of great days and nights here and there since. But overall, it’s been awfully rocky, including 3 early pod changes because they were clearly not working. One was never right, and we left it longer than we should have because we’re new to this and weren’t sure. The other two started out fine but later, her sugar went up (you know, as if she weren’t getting any insulin); we gave her a manual injection, which worked as expected, and gave her new pods. She’s been pumping less than three weeks now, changing every three days or sooner for the duds. Is this a normal failure rate? I’ll write off the one that was never inserted right, but what about the two that worked for a day or two and then apparently stopped working? Are we doing something wrong? She’s rotating her sites, pinching when she inserts, and there was nothing visibly wrong with this last one at all. (The first time, she said it hurt right from the beginning, though not a lot, but in hindsight, the medical team consensus is it was never right. The second time didn’t hurt, and worked well for awhile, but when she went inexplicably high and removed the old pod, her insertion site was red, irritated, and swollen. This one, in contrast to the prior two, didn’t hurt and looked fine, both; it just didn’t bring her sugar down despite three corrections (giving the first two almost two hours, and the third one an hour fifteen before concluding it wasn’t working and we needed to go to the pens), and checking the Dexcom display obsessively to make sure we didn’t over-correct. (So far so good there.)
Her endo is horribly non-responsive, and the nurse educator just doesn’t seem to know all that much. Clearly we need a new medical team, but in the meantime, is this what we can expect from the Omnipod? Is it likely user error? Just bad luck?
Hi @srozelle! I’ve been on the Omnipod for years, just switched to the Omnipod Dash. I have never had issues like that. Switching from injections to a pump is a big change though. Your body needs time to adjust. Have you contacted Omnipod? When I first went on, that had a trainer come out to me. She had a nursing background and was extremely helpful. You can also report those bad pods to the company, and they will send you replacements for free.
Thanks, Kate! I’ve been in close contact with the Omnipod rep (who also has T1D and has used Omnipod for years and other pumps before that; she’s terrific). It looks like this last one may not have been a bad pod after all: although she came down with the manual Humalog and Basaglar injections (as I wrote in the OP), she shot back up again 2-3 hours later, and woke up with ketones. The doctor thinks it’s just unpredictable hormone surges: she’s growing like mad, puberty is not too far away, and the wee hours is when those things happen — and they require more insulin.
All of which led me to conclude we need to switch to the t-slim, so it can correct for us while she sleeps. Honestly, if the Horizon feature were getting approved sooner, we’d wait, but it got pushed back to January, and we can’t keep this up until then. We’re tired.
You need to contact Insulet, I have had a couple of issues, but nothing major. Has your daughter been tested to see if she is allergic to insulin? I am and sometimes I causes problems. Have an Insulin antibody test done… Insulin allergy is especially bad on kids. Rashes, ineffective coverage, etc. Talk to her doctor about having it done . Hope this helps. Bye Jan
hi! so i’ve been on the omnipod dash for about 2 months. i actually experienced a LOT of problems like your girl in the very beginning. i had quite a few failures (i think i had 3 in the first 2 weeks!) and had lots of redness and swelling around the cannula insertion spots. which really worried me because i had also been on MDI and even with the pod failures, i absolutely LOVED the freedom omnipod gave me. but then i kept rotating sites/locations and things have been amazing ever since then!! so my recommendation to you is just to stick with it, making sure to try every site. for example, for the first few pods, i kept trying my legs, along the side of my thigh and on top, and most of my pod failures happened there, plus i got bad reactions! i tried my arm (didn’t like it there personally, especially since i LOVE my dexcom there!). and then what i’ve found to work REALLY well is on my abdomen and back. i rotate between those two sites, right and left, and i’ve had literally no problems! of course, the pod isn’t for everyone, but just make sure you give it a chance everywhere! i think you said you were keeping in contact with omnipod, which is perfect because they will replace your pods without any problem! my very first pod failure they actually sent a new one with priority shipping! i’m sorry that your daughters endo team isn’t great:( on another note, if her blood sugars keep running super high, i would definitely change her basal/bolus rates, but i’m sure you guys know best! hope this helps at all! wish you guys the best!!
Thanks, Janice: I’ve never even heard of insulin allergies! And Piper: thank you for sharing your experience and encouraging us to keep with it!
We’re not giving up on pumping — she really does love not having to take shots, and being able to adjust her insulin whenever and so easily is terrific— but we’ve got the paperwork underway to switch to the t-slim. I’m convinced she needs that closed-loop while she’s sleeping. But I told Omnipod, she really likes the waterproof and tubeless aspects, so we might switch back once Horizon’s available.
I had the same issue with Omnipod and for me it was the 45 degree insertion angle which is the only way Omnipod comes. It was a full time job just making sure it worked and sitting on the phone trying to get replacements. After a year and very frustrated I switched to t slim and have never been happier! T slim w Dexcom is easy puts diabetes in the background and works!! I’m no longer on the phone trying to get replacements bc I never need them. My time in the correct range has improved 11% in 3 months. They have different insertion angles as well. Diabetes takes a lot of guess and check and I’ve been on several pumps/regimens but t slim w Dexcom has definitely been the easiest and most effective in my experience. Looking back the frustration and time on Omnipod was horrible. Please know if you stick w Omnipod they do replace Insulin lost but they failed to tell me that for 9mo. So make sure you ask. It is an additional phone call and lengthy wait time. Best of luck!
I have one worry about the tubes, though: my daughter’s a really restless sleeper. Her sheets are always a twisted wreck in the morning, sometimes with the fitted sheet coming clean off the bed. So how is that going to work, if she’s wearing tubing?
If I’m wearing a dress, or exercise clothes without pockets, I tuck my pump into my bra. To my great surprise I have seen bras in the children’s section so she could try that. I sleep in shorts/exercise pants over panties, and sometimes I clip my pump to the waistband of the panties and tuck the tubing inside the shorts.
Been on pods over 3 years and have had similar issues intermittently the whole time. My endo’s office weren’t very helpful either but the insulet trainer is the only reason I never dropped them.
I agree with some others, she may be reacting to the angle, location or material of the cannula. She may be allergic to the adhesive. Wouldn’t it be great to be able to change the infusion set to see if that fixes the problems?
I’m definitely switching to a different system with an infusion set when my warranty is up.
We had the exact same issue when trying Omnipod. We actually went back to injections for our son for about a year. No one, including the omnipod reps could figure out why we had those issues. We just started the tandem t slim 2 months ago and initially had the same issue with the Teflon cannula (which is what omnipod is made of). We switched to the steel cannula and it has worked AMAZING. We realize now that the omnipod tubing was probably kinking and altering insulin delivery/not delivering at all, etc.
This is hugely helpful, everyone. We definitely need more advice on wearing the pump and stashing the tubes, so thank you, Dorie. Katie and Kevin: I didn’t know there were choices for infusion sets, or that that might explain the issues we’re having, so thank you for that. We’ll be that much better able to problem-solve when the new pump arrives.
Seriously, this TypeOneNation Forum is a wonderful resource. We are so grateful to each of you, and to anyone else who wants to chime in with ideas and experience to share!
Since you/your daughter are new to the pump, it will take time to get your basal rates perfected.
As you mentioned, you have been on it for 3 weeks. The basal rates can take a few MONTHS to get perfected. They are not spot on over night. They are only guessed at what they should be when you go on the pump, especially if it is for a child, and a child going through puberty. (Oh my, those are hard years too).
I am sorry, that you and your daughter are having so much trouble with the OmniPod. However, please do give it time to work out the basal rates. READ the book “Pumping Insulin” by John Walsh PA-C CDE and Ruth Roberts MA (it is known as the Pumpers Bible). As it will also tell you how to Basal test, and also tell you more than you will EVER want to know about pumping… and get the MOST RECENT edition of the book…
I’ve had four minimed pumps and two animas pumps and switch to omnipod 3 years ago. There are some great new innovations in pump technology but don’t think you’re job of dosing insulin 24/7 is over. I went from the lastest pump technology to a very basic omnipod system to force myself to rotate sites, since 50 years of needles causes hard subcutaneous areas and the Animas pump occlusion warning didn’t work. I think you are likely not picking the best location for the pod, and I have seen so called experts claim that Basal is 30% or something lower but their are so many factors in your metabolism that might affect your requirement. The insertion of pod should sting and very soon have no pain, I usually bolus a small amount right after a pump change if it hurts then I chose a bad site. The company is happy to replace pods and not having tubing to deal with is a nice thing for kids as no one has to know they are diabetic.
My daughter had had similar issues out of the blue after using Omnipod for almost 2 years. We worked with a rep from Insulet and figured out the adhesive was irritating my daughter. We began spraying the site with Flonase and letting it dry before inserting a new pod and have had no problems since. My daughter also only uses her tummy and upper buttocks since other sites recommended have never worked for her. I hope you and yours daughter find what works for you!
Hey my daughter who is very active and we worried about tubing but there is this great company called spibelts they are great and very colorful and my daughter just wears them under her clothes like fanny pack! They are actually for insulin pumps
I started using the Omnipod in February and I had issues like that when I first started, too. Two perfect days, just like your daughter. Then a week of mess before another decent day.
Some of it was site-related. It’s taken me a little while to figure out which sites work best. Parts of my stomach are too round, for example, and more likely to leak or get red, swollen and itchy at the insertion site. My arms, on the other hand, move and stretch too much when I’m at work, so the catheter’s more likely to come out.
Some of the issue has been that I’m still refining the program. I’m still making tiny adjustments to my settings.
I also noticed that even when a pod was working well for the first two days I always had relentlessly high blood sugars on the 3rd day, especially in the last 12 hours before expiration. I talked to two people at Insulet and one of my nurses about it and ultimately decided that I need to be changing my pods every 2 days instead of every 3. Maybe the insulin in the pod is going bad earlier for me than for most? Maybe I’m more likely to experience swelling at the insertion site than most? Who knows? What I do know, is that a) my blood sugars have been better and b) my insertion sites are less red and itchy since I started changing the pods more frequently.
It is getting better, but it’s been a very bumpy road. I was ready to quit and just smash the pdm against the wall about a month ago.