Hi everyone. I am so hopeful you can help me figure out what I am doing wrong or point me in the right direction to get the help I need. I am a little frustrated by the lack of real life support I am getting right now. We had a pump educator at first but I think she is done with me and my apparent lack of ability, :P. Should I be contacting Insulet- are they good about troubleshooting? I am a pretty introverted person and would so much prefer to not to do all of this interacting in the first place, haha, but I know I don't really have a choice at this point. I just am not sure where to turn and wondered where others have gotten the support they have needed.
My ten year old daughter started on the Omnipod on Friday, Oct. 3rd. Since then we have gone through a box of pods and I am about to put on a new one from the second box (as soon as the Emla has done its job). I think I have all of the adhesive issues taken care of- we have Skin Tac and Tegaderm. We do live in a very humid climate and my daughter does sweat a lot. Lucky girl, she takes after me :).
Many of the pods we have used seem to work at first but by the second day, her numbers creep higher and higher. This last pod was put on Monday at 11:30am and worked great for the first day and evening. I could tell by yesterday morning that something had changed by looking at the Dexcom from overnight- numbers just gradually creeping higher and higher. I could not see in the little window to see the cannula b/c it was fogged up but I did not and still do not see wetness on the adhesive (which I have seen in some of the pods and I am assuming that this is leaking insulin?). She was in the 250s all day and woke up this morning at 308.
What I am wondering is if this is an issue with her settings or if these are failures on my part? Have I pulled the plug on some of the pods before I should have in my desperation to keep her out of the 200s and 300s? The settings are very similar to what she had with Lantus and bolus insulin so it does not seem to me that this is the issue. Then I wonder if this would have happened even with shots- maybe this is a growth hormone issue? Seems like there are so many variables.
I just peeked in the window again on this now deactivated pod (working on removing it for the next one) and the fog has cleared. I see the cannula and it appears to be in her skin. It is angled a bit towards the window- is that the way it should look?
As hard as it was with shots, I felt like I had some measure of control and we were doing pretty well. Now I feel like it is all chaotic and I can't seem to get things right. Is it me? Is it this hard for everyone at first? Am I doing something wrong? Am I making any sense here at all :)? Thank you for any advice you can offer. I don't want to give up yet but I am feeling close to it.
I would recommend seeing your child's doctor--assuming that the doctor was involved in moving her to a pump. Obviously, those high blood glucose levels are not something you want to have your child regularly experience.
Call your endo and send them her numbers. Usually when they start on the pod they err on side of caution and have her basal rate set lower. There is usually a "tweak" time involved with new pump. She probably just needs her basal rates adjusted.
Another thing to note is her numbers will change with different pod placement sites. My son's numbers change depending on pod sites. He gets better numbers when pod is on stomach than when on thigh, etc.
Also, if you are changing her pod every 2 days you might want to have your endo write her RX for 2day pod changes instead of 3day pod changes especially if you live in a humid environment that way insurance will cover the additional pods.
I don't think you need to "pull the plug" on her pod if her numbers creep up. Just do a correction. You might need to do more of a correction the older the insulin gets but changing out the pods before needed can get pricey.
Hope this helps a little. It will get better and it will be like no big deal soon. My son has been on Omnipod since Feb. We love it and have been having great sucess (despite puberty which makes his numbers go everywhere). good luck.
So about the damp looking adhesive near the cannula on some of our other pods- is this likely insulin that has leaked? Wish it would turn the adhesive purple when insulin leaks then I would know if it is sweat or not, haha. Does this sound familiar to anyone, this darker, wet area on the adhesive above the cannula window or to the side of it?
Yes, and I had pretty good control of things with shots so this has been stressing me out a great deal with these higher numbers. Plus she just hates being high and I just want to make it all okay somehow magically, you know? I will give the dr a call and see if they can help me. Thanks.
I don’t really have much more to add then what is already here, except Breath… and then again. LOL. it is scary at the begining but you said you also have a dexcom. call her endo and they will tweak it for you. most times if it is something wrong with the pod an alarm will go off. with all new things patience is always forgoten. good luck, and happy podding once you feel comfortable you will be glad you never gave up and your daughter will be glad also.
Thank you for your reply. It helps to hear how it might play out over the 3 day course with the pod. I appreciate your support
The pump is a big adjustment, it took us over a month to get comfortable with everything. We notice higher numbers after a pod change, and have added a mini bolus after insertion to correct that. To echo what others have said, it may be a bad batch of pods, or maybe her basal. If she is in an unusually warm situation, the insulin may be degrading. We generally bolus for a high, and check in an hour to see if numbers are coming down before we change a setting. Hang in there and good luck!
It sounds like the basal is too low... Check with your daughter's endo, hopefully they can help!
Sounds to me that simply your doctor needs to get into the process. I believe from reading your story that the settings are simply not correct. This is actually very normal for the first few months of insulin pumping. It is a different delivery method and the body does adjust and change to it over time. It just takes time to get it right. And, yes there are a LOT of variables, as such is life in general and we are talking directly and specifically about sustaining life. However, you can get there and it will become easier in time.
And as far as cannula insertion? I've never been able to use the window to see. Instead I just use my own judgment on if the cannula is in or not, and BG readings. 300 is high but not too alarming just as a single reading, but quick rising is a sign as is no change to BG an hour after corrections. If you don't already use a CGM, get one. BIG difference in what you know and how easy you can control things. Though there is a LOT more to learn there too, so be ready for that too.
The condensation/fog in the little window is very common for me. Does not indicate a problem. If you are new to the pod, numbers are high, probably means you are just not adjusted to your MDI needs vs Pumps needs yet. Correct the highs. Kids have hormone fluxes, you feed them things that make their numbers flux (the more carbs the more insulin and calculation you have to do, the less carbs, the less calculation and insulin you have to administer). Taking insulin and carb counting can be a crapshoot sometimes. Packaging is not always correct, or you do not estimate correctly. And children do sneak food (it happens) or forget they've eaten something. After years of this, I've learned it is easier to minimize carb intake. I wish my mom had figured that out when my brother and I were kids (my brother and I are both T1 diabetics). She may have gotten some sleep at night.
Hi there. I am really empathetic toward all of your issues. Do you have an educator associated with your endocrinologist? I received about 10% of my training from Insulet and the rest was done by the diabetes educator associated with my endo. She followed me for 3 weeks and adjusted my numbers every other day until we got my basal and all of my other settings right. With that said if your daughter is 10 there are probably other variables involved. Reach out to your endo and I hope to hear good news for you both very soon!
That is good to know about the pod alarm. We did have one occlusion in all of the pods we have tried so far but with the other times when my suspicion was that the cannula was leaking (does this happen??), there was no alarm.
I did a little experiement this morning. Based on the Dexcom's reading at 5:30am, I gave her 4 units to correct while she was still sleeping. It did practically nothing and maybe dropped her 20 points after 3 hours. She slept in this morning (we are homeschoolers) and so when she woke up and had breakfast, I corrected and bolused with a syringe. Her BG is coming down nicely now. Maybe I am wrong, but it seems to be that something was not working with the pump.
Thanks so much for your ideas.
It could be, although it is quite high of a basal rate. She seems to be insulin resistant on top of everything else. I will discuss this with the endo, thanks.
Thanks so much. Sounds like you got great support. I am not finding that I am getting that right now so I am going to have to more vocal, which is not easy for me but necessary.
Thanks so much for your thoughts. And I totally get the lower carb thing. I see it all the time when we stay on the low end that things are easier to control. The hard part is that we are vegetarian. My daughter will eat cheese and eggs so I am sure that I can get a little more creative than I have been. I try to shoot for 30-40 carbs per meal but would love to take that a little lower.
Are you now or can you become connected to an endo clinic with a diabetic educator who are both VERY familiar with pump therapy for diabetes? If you aren't getting the support & training you need don't blame yourself- try to find better medical providers. There ARE so many variables! It is very frustrating, confusing, & challenging to work through all this-which is precisely why you need & deserve as much training & support as is necessary to care for your daughter.
And this forum is a fantastic resource! Keep in touch.
My husband is a low carb vegan. Very possible. I seldom eat meat. Most of my meals are low carb vegetarian/low carb vegan and high good fats. But it is rare that I'd go over 50 carbs a day. And those are good carbs (vegetable sources and nuts). I spend so much less time managing my diabetes now than I ever did. I can count on my numbers being in a great range (75-95) with no fear of going low. High just doesn't happen now. It is kind of freeing (got my life back). Kind of like switching from MDI to the Pod was freeing (once you get the hang of it).
Katkat, would you care to maybe share a bit of your diet, even via PM maybe? I am already fair with Carb counts etc, but I am not very good in the veggie side of things. I love certain vegs but am deeply afraid of not having high enough proteins etc to carry me between meals. I am also a bit limited on funding so I have to take that into account as well, meaning if going more veggy means a higher food cost then I will have to just skip it.