We surrender!

Diabetes Technology Insulin Pumps
21

Jennifer, as Zoe said.. the learning curve is long on a pump. You will need to tweak doses for several weeks, maybe a couple of months, when starting out on a pump. There is a LOT to learn about carb counting and the effect of meals on him individually.. A whole lot to learn:.A Starburst is quick sugar absorption. A slice of pizza lingers for hours so the insulin needs to as well Please do not give up on it yet. Think Like a Pancreas ( Gary Scheiner) and "Pumping Insulin" by John Walsh are good books. Take it one step at a time and maybe start 0ver AFTER the holidays. IT IS OK O to take pump break. When you come back to it, make sure you take very small steps. Trying to get it all right at one time is not possible and a set up for burn-out and frustration.

God Bless
Brunetta

22

I would second the recommendation of both Think Like a Pancreas and Pumping Insulin. Both have been a huge help for me. You can get them for kindle if you want them right now!

Also, I would recommend a slant set. I am using the t-slim and have found that my insulin requirements are 30% higher if I use the Cleo90's. I also do not like that I can not see the insertion site, can't tell if it has an issue. With the comfort short' s I'm currently using I can see if there is a site problem. Please do not give up on the pump until you have tried other sets. There is a fair amount of info on the web that some people have control issues with the cleos.

Zoe's reminder that you need to adjust the basal at least 2 hours before you need the effect is right on! Pumping Insulin has good recommendation on things like that.

I would call tandem for help/advice. They will be there 24/7 does not matter that it is a holiday. they know the pump inside and out. They will know it better then your office pump nurse. Speak with your trainer, they know the ins and outs as well as the ups and downs and want to support you while you work out the issues your son is having.

When you get this worked out it will get better! And it will be so much easier to go with life as it happens rather than having to stick with a rigid schedule.

There is a lot of experience here, keep asking your questions, we are all here to help.

23

First of all I am sorry for the issues you have had, Nothing is for everyone. and if it is not right then it is not right.

But I want to challenge one thing you said. A pump does not automatically make things easier. In fact a pump is a complicated piece of machinery, it must be treated like an aide not the end all. Fir most of us a pump is a welcome go to piece of hardware. But it is a hardware aide not an automatic fix. The hard work is still needed.

I wish you the best, I do hope you will find the best solution, for me it was the pump. But it took 29 years to get there. It may take you awhile as well. i trust you will find the answer, but whatever the answer, it is tool not solution. A solution is a new pancreas that produces and self regulates insulin.

24

Hi Hobbit. I spoke with tandem today and the pump is working fine. The pump nurse called in a prescription for slanted infusion sets we just have to wait for them to arrive. I have Anthony back on injections and at 3am he was 77 and at 5am 110 so I’m sorry to everyone saying his basal was too low. This tells me it’s more likely the infusion sets not properly delivering the insulin. His blood sugar wouldn’t be 200 points lower on injections. Especially as high as we had his basal set at night. I’m relieved right now to see good numbers and hopefully by the time the new sets arrive will be mentally rested enough to give them a try! I still believe the pump can be great. I’ve read many success stories of people who are thrilled with pumping. I know we can get there, too. It’s just taking us a little more effort to work out the kinks. I will say again though that stopping the pump for now was the best choice. I can’t justify allowing his numbers to stay so high while we try to guess what the problem is. Thanks again for the advice! And it looks like I need to visit amazon to buy myself a few books for Christmas. :slight_smile:

25

It just make me wonder if the pump wasn’t working. There should be no reason that his BS should be hovering at 300 unless insulin was not being delivered. Granted there is an adjustment period but you already know a lot of the inputs to start with (e.g lantus dosage and insulin carb ratio) prior to starting the pump. It’s relatively easy for the endo to take those numbers and provide the starting pump settings.those settings will need to be fine tuned but there is absolutely no reason he should be running in the 300’s. Unless there was a complete revamp of his diet because he moved to the pump, I would vote that there was a hardware failure of some type.

26

Glad to see you have returned to good numbers. Taking a break with MDI until you both recover a bit is well worth it.
Once you get slant sets on hand and have enjoyed your holidays will be time enough to try again.
Did you go with the cleos because of the inserter? Does the slant set you choose also have an inserted? If it does I want to mention that auto inserters for slant sets may cause kinking of the cannula leading to delivery failure. I have always done manual insertions and so far have never had that problem. It is easy to learn manual insertion, and can be done even if the set you chose has an auto inserter.

You should be able to get samples of several different sets to try. Ask your pump team for samples. You may need to call the manufacturer/pump supplier but you can get then to trial. Once you find what works then use that as your go to set.

I have always wondered if the length of the Cleo cannula was why I needed so much more insulin while using them, so this go round I asked for 1 Cleo set with the longer cannula. Will be interesting to see it I still need the 30% higher rates all around. The inserter is convenient for one handed insertion but so far was not worth the aggravation of a totally separate pump program.

27

I wonder if the insulin could be somehow clogging in the line or set? What an odyssey this has been for you and your son and I hope you get it resolved!

28

That can happen with apidra insulin and the tslim, not sure that there was a mention of the type of rapid being used. Novolog or humalog are the recomended insulins in the tslim and the only ones that were tested.
Apidra has a high rate of occlusions and is not recommended in the tslim.

29

thank you hobbit I had no idea

30

Jen,
Do not remember if you mentioned what rapid you are using but apidra should NOT be used in the tslim. It seems to cause a lot of occlusion and delivery failures. I would hope they asked what your rapid is when you called the tandem hot line

31

I also have a very, very thin 10 yr old. We use the Medtronic pump so the infusion sets are different, but since he is so thin we can only insert in one area of his body. We use the very low back/high butt. That is the only area that has enough “fat”. I am extremely careful to rotate the sets to avoid building scare tissue, but this has been working for us for 2 1/2 years.

When we started on the pump I was really anxious about the change. So in addition to using the advise of our endo/pump team (none of who have diabetes and use a pump daily), I hired Gary Scheiner (T1 and on a pump). Gary’s practice is very expensive but his guidance was extremely valuable!

Another problem we have run into at times, is that since it is so easy to dose for snacks, my son will snack and dose too frequently. Thus the insulin will not have time to pull down his blood sugar before he’s eating again causing him to stay high for hours if not all day.

Last, since the growth hormones and seasons seem to effect his insulin needs we do fasting basel testing every few months. Since the fasting test is hard on a child we usually spread that over a few weeks.

I hope things work out!

32

Hi Jennifer...so sorry to hear you're still having pump issues. Glad to hear your son is back on MDI and is at least getting some relief and good numbers. A few things come to mind:

1) he IS getting some insulin, obviously, or his numbers would be sky high, much higher but obviously not enough..why, site - set - incorrect doses? Also, i've been told too that Apidra only lasts 2 days and tends not to work as well in pump, not sure if you're using apidra.

2) a spike and drop can happen anytime during the night, which can also lead to liver dumps and can cause very high highs in AM, can you get a CGM or at least a trial, this could be really help?

3) I too am very lean with muscle and was always told to use the smallest, shortest cannulas (as well as with syringes) not the reverse as we're aiming for subq, which is the first layer under skin, before we hit muscle. so, maybe wrong sets for your guy?

4) Dawn phenomenon can happen at varies times. I believe it's different for many, some say it starts at 1AM, some say 3AM some say, my endo, it can be when someone actually wakes up so maybe 8AM. I've also been told and read many things about when to increase basal rates to off-set DP, 1 or 2 hours prior, think it takes trial and error with that. But, if back on MDI and he's doing good, then that says something. Checking at just 3AM won't show what may or may not be happening.

5) It's been my experience you don't need a new Rx to get new sets, you should be able to get samples and whichever work, just order them.

Best of luck to you. You need a break. :) Happy Holidays!

33

TuMember (former admin, or maybe she still is? Not 100% sure...) Melissa wrote a review of the TSlim on her blog. She was using Apidra which I never tried but she writes very thorough reviews in general and, eventually, decided not to use it (there may be a couple of other blogs regarding her ongoing experiments with it...) but I like the way she writes and found them informative.

http://www.sweetlyvoiced.com/2012/10/tslim-review.html

I haven't had too many problems with my pump but like the angled sets the most and have had very few problems with them. Maybe trying some different sets might help. Another thing that I've done for a while is to "goose it" by turning my basal up to 200% when I stick it in. I had run into a thread on FB where a non-pumper mentioned this trick to someone who was having site change issues and it seems to really help although it's perhaps easier with a CGM as I sort of sit tight until the BG comes around and then kill the boosted basal. I would, of course, be very leery doing this with a kid but maybe even a slight boost would help to get the set online?

34

I wanted to answer a few questions that were brought up and give a little update. Yes, Anthony is very thin. Yes, we use Humalog. The rep at tandem said Huma has only been tested for 48 hour use in the tslim but we weren't even making it 4 hours so that's neither here nor there. We are still on MDI and his numbers have been great. His pump nurse is on vacation until 1/2 so we will continue with MDI until then. I want the pump nurse and the doctor in the office before I make any changes from our current routine. I'm leaning more and more towards his issue being the wrong infusion set for his body type. His MDI doses are what they were pre-pump and fall in line with what the pump doses were. Logically I'm thinking if MDI and pump doses are similar we shouldn't see 100 with MDI and 300 with the pump. Thanks again for the info and support. Once we try the slanted infusion sets I will let you know if they work. Cross your fingers for us! Right now I'm just happy his numbers are in control. It makes it much easier to sleep at night without the stress! At this point I'm not picky about what works as long as we find what works. I'm also going to ask about a CGM. I'm not sure what the requirements are, if any, to be able to get one but that would definitely help.

35

los - have you ever considered using old fashioned Regular insulin for a "square wave" effect? Even though I'm a long time pump user, I like reading about MDI success like yours. It's nice to know that there's a viable back-up system if ever I need it. The last time I used MDI there were no pens, just vials and syringes!

36

Glad that MDI and low carb works for you. But as a adult with a very low insulin requirement MDI was beginning NOT to work for me. Pens may be convenient if the restricted dose they deliver can work for you, but for one who needs micro doses they just do not work. Lantus does not come in half unit dosing in pens, I needed more than 1 unit but less than 2 units 2x a day. For basal my I:C ratio varied from 1:25 to 1:35 to 1:50 to 1:120 depending on time of day and what my activity levels were at work. Not to mention how my basal and bolus need changed if I wanted to go hiking,or climbing for a weekend. Longer / camping backpacking trips were a disaster of trying to carry/consume enough carbs to keep up with both long and short acting insulin.

With a pump I have the ability to change on the fly, be spontaneous with activities, not be tied to my insulin with my food choices. It is the closest to my old life I will be able to get until they come up with a cure or a true artificial pancreas.

I'm a full size adult - can't imagine trying to use MDI and keep tight control with a skinny child. Many of the modifications I have made in my pump programs are based on what is done in the pediatric population. My hat is off to all the pediatric pumpers out there!

Go with what works for you and always keep an open mind about how other ways of doing things. Some times bits and pieces from several view points will come together to give you a better way to good control.

37

i use half units and one can get half unit syringes, that's what i use for both novolog and levemir.

38

Hello everyone! Sooooo.....we got the Inset 30's on Friday evening and started pumping again yesterday morning. It's only been 24 hours but Anthony's numbers have been perfect :) I was really hoping the angled infusion sets would do the trick but didn't want to get my hopes up just to be disappointed but YAY! If his numbers stay as good as they have been I'll be a happy momma! We tested last night at 11:30pm (90) 1:30am (115) 3:30am (106) 5:30am (112) and 8:30 am (111) That beats the heck out of the 290's we saw with the Cleo's. Thanks again for all of the advice and support!

39

For me, and I think for a number of others who pump, the big advantage is the variable basal rate. When I was taking Lantus, if I didn't eat all day I would be super high in the morning, drop low around lunch, high again after dinner, and go low again in the middle of the night. On the pump, my basal rates are set to account for this, and vary quite a bit throughout the day. When I was on MDI I was taking 8-10 shots per day trying to control my blood sugar, including getting up every night at 3:00 to take insulin. Another big advantage of the pump is being able to adjust basal rates very quickly (over a matter of hours instead of a matter of days), which is particularly helpful for those of us with rapid hormonal changes. :) My total insulin dose can go up or down by 10 units within a 24 hour period when my hormones change. With MDI, by the time I had doses adjusted sometimes the need for the adjustment had already passed.

I too am having issues with infusion sets (as you know) and am thinking of taking a pump vacation, but the thought of MDI just makes me cringe. I don't mind the needles at all, it's just the thought of trying to accommodate my basal rate. On shots almost all my morning readings were over 180. I was getting up at 3:00 AM to take insulin every night and could never sleep in without ending up in the 300s. On the pump, yesterday I slept in till 1:00 PM and woke up at 88. I think MDI works very well for people who have relatively flat basal needs, but not so well for people who have highly variable needs throughout the day. (Ironically, the last infusion set I used was not irritated at all and my blood sugars were perfect. SO annoying because I know my control would be awesome if all of my sites stayed like that!)

40

BooYaaahh!
Glad the slant sets are working, and his numbers are so good. Enjoy while you can.
Just known that when puberty kicks in they will go back to being all over the place, only then it will be wild hormone storms not bad absorption from the wrong set.