My 10 year old daughter began using the Omnipod a few weeks ago, switching from MDI. Her (our :)) control with MDI was quite good; her A1c's were regularly in the 6.5 range. However, since beginning on the pod, her numbers and insulin needs have skyrocketed. We've changed basals, ratios, correction factors, etc., to little avail. We've also had two pod failures requiring early site changes.
I so want this to work out for her as she greatly enjoys the independence it offers and the absence of so many injections. I'm playing with various sites and so forth, but I'm wondering if anyone had a similar type of start and grew more successful with knowledge and experience.
I've read and re-read Pumping Insulin and Think Like a Pancreas; the ideas have been so helpful as, obviously, the medical folks are ok waiting things out and trying small changes while I'm thinking more like a mom and worrying terribly about what these numbers are doing to her body. Of course, to her, we just make it all a logic problem and say it will take some time to figure out the new things we need to do.
Any thoughts or suggestions would be much appreciated! Thanks in advance!
I had the same trouble with the Omnipod for a few months when I first started, and I have to tell you, it does get better! Once you and your daughter figure out a few things about the best pod placement for her body, you'll both be amazed at the ease of great control.
Personally, my best pod placement is on my lower back with the cannula aimed down toward my side. For your daughter, any area where there is an inch to pinch should work well, but make sure the cannula is aimed at least slightly down for insertion -- I found that gravity helps quite a bit in regular insulin delivery.
Also, switching delivery areas can affect insulin absorption quite a bit. I'm much more sensitive to insulin when the pod is on my stomach than when on my lower back. Something to watch for.
In my experience, too, pod failures happen more often than you want in the early weeks. As you get used to the quirks of pod placement and get into a routine, the failures will rarely ever happen. Although I know a few male pod users who still have failures often, so it may vary by person.
As for the worry about complications: these numbers are so temporary that it won't make much difference in the long run. My numbers weren't always great (I was at 8.0 A1c for a few years in high school) and yet I'm complication free after 21 years.
Thank you very, very much; that was so helpful and reassuring. I had been paying attention to the sites we've chosen in general (and thankfully marking whether the pod was facing up or down), but the idea of "gravity" itself hadn't entered into my thinking. That makes lots of sense, as does all else you stated. We'll keep trying new areas and tracking what works and what doesn't.
Even though I know it's a long road and I can't pay too much attention to each twist and turn, it is wonderful to hear how well you're doing and how much success you have found with the Omnipod. It would be easy to turn back to MDI, but I feel hopeful again that we can make this work (something that will keep my daughter both healthy and happy)!
It sounds like an infusion set problem. Is the little plastic canula bent when it's removed from her skin?
If the Omnipod doesn't work for you, then you may also consider a traditional pump. They have several infusion sets that require less fat and work better for kids or slim or muscular people.
With a pump you should have much better control within a few weeks and insulin needs typically drop by about 20%.
Thanks, Jenna. I'll definitely take a look at the cannula next time we change the pod. We are playing around with various sites and such as Christa suggested, but realize we may need to consider alternatives if things don't work out. She is a tall, skinny kid, so it wouldn't be unthinkable that a different type of infusion set might be needed. We're still hoping we can make this work as the Omnipod really appeals to her, but I'm keeping an open mind and trying to be a good observer, thinker and experimenter. Hearing from all of you who are a few more miles down the road is so helpful on the journey!
Just wanted to say that we have a very active in sports 14 year old daughter. She was diagnosed T1 soon to be two years ago. She was on injections and we were able to get her on the Omnipod about 5 months after being diagnosed. I can say she LOVES the Omnipod pump. She has played on a travel softball team for several years before and after being diagnosed and on the pump. She played basketball, softball, and track at school this past year.
As you stated we had a lot of the same issues for the first few months. A lot of highs that we did not understand. A lot of pump failures. But I can say now we have almost no pump failures. Omnipod is great about replacing pumps that go bad. Our daughter is a very tall and skinny girl. She only wears the pump on her lower back just above the belt line and just below the belt line. Rotating it around these four spots. Depending on what she is doing for the next three days depends on if it goes above the belt or below. She applies the pump horizontal at all times. Turning the canula different directions each time. I would agree with the previous post that any where you can pinch an inch should work. The canula does need to be in fatty tissue. If it pokes on muscle tissue it will be uncomfortable to wear. Wearing tight pants over the pump below the belt line also causes the canula to allow insulin to come up on top of the skin under the pump. This only happens when wearing really tight jeans.
She did have a lot of what Omnipod said was absorption problems in the beginning but that lasted a couple of months and then had none. We had real high numbers for the first couple of months after pump changes. We did start dosing one half and sometimes a full unit just prior to changing the pump to help keep the pump change high from being in the 300 levels. Early on it helped to try to dose and change the pump after eating. Trying not to eat after the pump change for a few hours will help with the high numbers at pump change. Our daughters A1C is at 7.1 and has continued to go down since being diagnosed. I can say all of the absorption issues, bad pumps, highs after pump changes have all left us.
We felt just like you do with the frustration and also felt that there were some serious issues with the Omnipods. Just hang in there it will be worth the effort for your daughter. It does get much much better.
Thank you so much for taking the time to respond in such a detailed manner. I can't tell you how helpful it is to hear some of the specific factors that worked for your daughter (and give us some options to try) as well as to simply know that she landed in a great place after a similarly rough start. My daughter is involved in many of the same sports (substituting soccer for track) and lives in sweatpants, so I think the sites you mentioned (as did Christa) might be particularly good ones for her to try.
Interesting that both your daughter and Christa also experienced several early pod failures that lessened substantially over time. That's reassuring to know.
Thank you all again. I'm incredibly grateful to have a group of articulate folks willing to take the time to share their experiences and help a fellow traveler on this road.
My son has been using the OmniPod for nearly 6 years. He started when he was four. His TDD was under 2 units on injections before he started. It more than doubled almost instantly when he started pumping. Eliminating the longer lasting insulin had a huge impact on the amount of insulin he needed each day. We had some Pod errors in the beginning too. We found placements that worked for us and we now (and for quite some time) rarely have errors. Good luck to you!
Thanks, Lorraine! My daughter's numbers have made the same sort of jump; it's reassuring to hear that she is not alone in that pattern. Six years says alot! We're definitely moving in a positive direction; most of the extreme highs have disappeared, and we've had no more pod failures of yet.
She does note at times a fair amount of itching or irritation under the pod. We've tried barrier wipes and tegaderm with some success, though by day three, the itching is pretty notable. Has anyone experienced similar sensations and found a product that has been helpful?
Thank you all again for the wonderful assistance navigating this new road!
We have not had irritation issues with OmniPod, but we have with DexCom (thisiscaleb.com/.../dexcom-adhesive-irritation-allergy). We tried a big combination of things, and ultimately he seems to have outgrown the allergy (knock wood). I should qualify - there was a short period of time when I wasn't being attentive to Caleb's skin and it was getting dry - this made his sites itch. Once I went back to being more careful (using adhesive removers to take the Pods off and using Eucerin or the like after removal) that became a non-issue. Scott Arden swears by not using alcohol on the skin - it eliminated the issue for his daughter. Just soap and water on the sites rather than drying alcohol. So many things to think about and work out!
Lots of good ideas to try; thanks! She does tend toward dry skin (especially this time of year), so I know that is a contributing factor. Thankfully, her reactions don't appear anywhere near as severe as Caleb's...wow. (Boy, is he a cutie, though!)