Frustrated with the pump


(eouwinga) #1

My 10 year old daughter has had T1D for a little over a year now. We just got a Tandem t-Slim about 3 weeks ago and it has caused many headaches. She will get to a point where is just does not seem like the pump is working at all. (We are changing her site every 2 days) Her numbers just keep climbing. The Endo said that it might be bad insulin or a bad site so each time, I change the site and have changed the insulin as well. She will be good for about a day and then her numbers climb. I put on a new site yesterday and already tonight, her numbers started climbing and the insulin didn’t seem to have any effect. Does the body ever just reject the use of a pump? The doctor ordered a sample of the angled insertion and also a stainless steel site today. Has anyone ever dealt with this? I am very weary of my daughter feeling so awful.

Thank-you!


(joe) #2

@eouwinga hi. Some people do have problems with occlusion (when an infusion set “clogs”). The metal sets are better for people who have this sensitivity. It takes a solid year to get basal rates correct so beginning pumpers have to also learn all over again. Sorry it’s been tough I hope your daughter finds easier times ahead.


(Bill) #3

@eouwinga,

I encourage you to call Tandem Diabetes Care and ask for help. Their listed technical support number is (858) 375-1473. As Joe said, some people need a “non-standard” infusion set.

Please do call Tandem Diabetes Care. Make them “earn their keep.” Perhaps they’ll have some suggestions. Then take those suggestions with you to your daughter’s physician and get this pump thing solved. For most people pumps allow for better diabetes management. After 60+ years of T1 I really rely on my pump.

Good luck to you and your daughter! Please keep us posted on developments.

Bill


(Ryan) #4

Another thing to consider with infusion sets is the angle. After talking with my endo, she recommended I switch from perpendicular sets (like the Medtronic Mio) to an angled set (I am now on the Silhouette).


(eouwinga) #6

Thank-you, everyone. We have stainless steel and angled samples on the way. Thank-you very much for your encouragement.


(Donna) #7

I agree with Joe. The basal rate can take a long time to figure out. You can gave several different rates at different times of day to coincide with activity levels. Hang in there. It’ll be worth it in the long run.


(Jacqueline) #8

So sorry to hear about your frustrations! I’ve been on the t:slim G4 for a couple of years myself. Personally, when I’m above 250 I correct with a shot instead of the pump–I can give 10+ units by pump and nothing will bring me down but a 3 u shot will do the trick in under an hour. I’ve done this with all my pumps though (I’ve been pumping for 8 years), not just the t:slim. Once I’m down the pump seems to work ok to keep me down. I hope the new sets work better for your daughter! I used to use angled sets and even though the needle can look a bit larger, I found them to hurt much less on the insertion. Best of luck!


(Dora) #9

My son has been on the tslim pump for almost 2 years. The first year was okay the second not so good. He spent the night in intensive care for high sugar. His problem was the inset. We were using a lunar lock inset. Changed to a tlock system. He is doing so much better. His doctor also put him on an injection if his blood sugar was over a certain number. We only had to do that for a few days. Now his sugars stay pretty good. Hope this helps. It might be the site. My son wears his on the back of his legs. Any where else and his sugars shot up


(Ron) #10

Areyou using some sort of skin barrier between the infusion set and her skin, like Skintac or an IV Prep?

I recently switched to an Omnipod, and after a few weeks my blood sugar was over 300 for almost a week no matter what (changed pods, sites, even avoided eating at all to no avail). I was just cleaning the sites with an alcohol swab. The Omnipod support suggested it could actually be some kind of a subcutaneous allergic reaction to the adhesive, and that using a skin barrier may help. I had boxes of IV Prep wipes I hadn’t used in years. Began using them and the problem hasn’t returned.

Don’t know if this could be the problem, but thought I’d offer it. All the best to you!


(wadawabbit) #11

I’m not criticizing but just asking why you change sites so frequently - is it because of the highs or is that the schedule the doctor put you on? I’m asking in party because a young body has only so much “real estate” so it can be easy to insert at or very near a previously used spot, which could be problematic. I used to change once a week but my new doctor had me stay on a 3 day schedule recently so I am having to be a little creative with my locations. I have found my upper thigh works well. If she’s a typically active 10 year old you may want to watch closely to see if placing it there takes her numbers too low though. I also use the back of my upper arm sometimes, although the tubing can be a little awkward that way. I hope the new infusion sets solve the problem!


(eouwinga) #12

No problem. Her pump would seem to be working for about 36 hours and then her numbers would continue to increase even when we were putting her numbers into the pump for a correction. There seems to be some sort of problem with the delivery of the insulin…so we are trying different infusion sites to see if one will be effective for a longer period of time.


(eouwinga) #13

We are not using a skin barrier. Thank-you for that suggestion!


(Julie) #14

I have had the same issue with the tubing infusion sets, but the stainless steel worked much better for me, such a difference! Also, it’s not painful as I expected after insertion, I don’t even feel it. Hopefully finding the right infusion set will help as it’s different for everyone.


(ksannie) #15

I have used 3 different brands of pump over 12 years. My current one is a T:slim. With all three, my glucose would be low on day 1, and I would have to set my basal rate to 80% of normal. On day 2 I run the regular basal rate. Then, on day 3, at some point, usually when I have less than 10-15 units left in the pump, I have to raise the basal rate to 130% - 150% of normal. So my basal requirements appear to go up each day. I think what is actually happening is gradual occlusion. I used steel infusion needles now. But when I used teflon-coated cannulas with my first pump, I was allergic, and this would cause the tissues to swell and completely block insulin delivery. (I was on a different pump in those days.) So do use steel needle cannulas, but you can expect basal requirements to vary from day to day for lots of reasons. When I am planning a vacation, stress raises my basal rates by about 60%. When I am ill, my basal requirements at least double. But without any other stressors, I find basal rates vary day by day. My doctor tells me some people have really high sugars right after changing sets. So no two of us are the same! Good luck


(Richard) #16

Her body is not handling the insertions. That is why is good first day or 2. Then it’s swelling under the skin etc. Now you have little micro infections which is a stress on the body and thus she gets higher. The process repeats over and over. I’ve been T1 40 years and had a pump 12 yrs. you might need a dif kind of pump. I have Medtronic and it’s a pain BUT the levels at which you can tweak settings are excellent. Bring 10 is hard AND you need to be ready for big. changes. On a side note my now 19 yr old daughter stated her period at 10! ( not diabetic. But as your daughter begins to change slowly … everything you think you know or have under control will change. There will be no ‘set and forget ‘ with infusion sets and CGM. Be ready. I know it’s hard. Just go one day at a time. KNOW everything you can. I’ve never had a dr that could say more than the medical averages. I was always diferent. So don’t let them give you answers you know in your heart may not be correct. It’s harder to get bad insulin than it used to be. It’s her body. And it’s to be expected. Find a FEMALE Endo …


(Dennis J. Dacey, PwD) #17

Hi @eouwinga, just a few words of comfort from a guy who has lived with diabetes since the 1950’s - yep, ancient history. I have used a pump for several years and like what it does for me but a pump is not necessary for good diabetes management - although it can help. I lived with diabetes for 47 years before getting my first pump and regularly had HbA1c averages well below 6.5. And I wasn’t always managing diabetes well.

A pump isn’t for everyone and there are many people who have managed well and never used a pump. I belong to a group comprised of folks who have lived with diabetes for more than 50 years and there is a good number of those people who don’t pump.

I’m not a medical doctor, a psychologist and I really do not know much about dermatology but I do know that there are PWD who have skin and the layers under that can not accommodate needles or cannulas left in - perhaps this is your son’s condition. And something else, your son is at a very sensitive age and thinking of the long-run, it may be better not to traumatize him with frustrations. I suggest putting the pump aside for a while and just do things the “old fashioned way”.


(eouwinga) #18

Thank-you so much for this encouragement! That is exactly where we are at right now. She does so well with the insulin pens and so we’ve taken a step back from the pump for now. She feels so much better with the insulin pens…for now! I really appreciate your wisdom.


(jdjim) #19

I’ve used the t-slim for 5 years and I also have had times when it just seems I’m not getting the insulin I call for when I bolus. It happened on a recent vacation and I almost ran out of infusion set supplies. I was very frustrated and upset, but I also know it wasn’t the pump because after disconnecting the pump from the set and doing a quick bolus, I could see insulin coming out. I think the problem always is tied to the set and/or site. Something to check is that the infusion tube is not bent or kinked when you pull the set off. I would check with your health care provider or diabetes educator for help, especially since you are so new with pumping. Also, I have found that Tandem support is very helpful.


(Dennis J. Dacey, PwD) #21

Hi Susan @td1since1973 , welcome to this group of sharing. Your 45 years living with diabetes makes you one of the “senior” members and even I [diagnosed July 4, 1957] am a “newbie” compared with several other contributors on TON.
After 45 years of injections you will appreciate your decision to begin with a pump - instead of your 2,400 shots each year you will now need to poke in an infusion set about 125 times a year. I waited almost 47 years before I began pumping just because I was giving so many injections having started on what is now called MDI in the 1970’s; that was also when I was offered my first pump that was worn as a backpack.

It is really a shame that Medtronic shipped you a box of defective glucose monitor sensors for your initiation into “closed loop” with your 670G because that gave you a bad taste. But just because you can not get CGM sensors because of the backlog of orders isn’t any reason to return the pump - the majority of pump users do not use, want or need the continuous glucose monitoring.