Ok everyone. After 40 agonizing days we have decided to stop the pump. Anthony has NEVER had worse numbers. Not only was he through the roof we also had an almost impossible time correcting. Getting the pump was supposed to be a great thing and it turned out to be the worst decision we ever could have made. I know the pump nurse wanted us to hang in there but I am not willing to go another month with numbers hovering close to 300. Did we choose the wrong pump? He was the Tandem t:slim. Does he have alligator skin that is so tough the insulin can't be absorbed properly? I don't know. And at this point, after having woken up at night to check his blood sugar at least once for 40 nights straight, I am glad that thing is buried back in it's box! I wonder if the thing is not working properly. I'm going to have to call the help desk but seeing as tomorrow is Christmas Eve I'm thinking that will have to wait until later. It will give me a few days to de-stress and see how his numbers are going to do back on injections. Apparently being diabetic isn't enough punishment for my 10 year old. Lets add a nightmare pump experience to the mix. Sigh. Good luck to all of you on the pump. I know some of you are new to it and I really hope your experience is much more positive.
Is he eating food when you are not looking?
Mark, he is so good. He never cheats. He follows the rules so strictly. The most he’ll ever eat without my approval is 1 starburst, etc that’s less than 5 carbs and even that is only very rarely. And not 1 pack but only 1 piece. He even checks me to make sure I’m sure about his carbs before he does his bolus. We are super careful with carb counting and his diet hasn’t changed since he started pumping.
I hate when people call it cheating. Eating is what it is.
But your issue could be a few things.
First thing to check is if the pump delivers correctly.
I use the long sets that I put in manually on an angle so I can see that they are in.
These are best for kids and lean people because the muscle can clog the cannula on lean people.
Also check the date and time… I once had my pump off by 12 hours by being pm instead of am and it screwed with me for days till I figured it out.
I found my pump made my control so much easier.
I think that if he is in the 300s then either the set is in wrong or the pump is malfunctioning.
When I first got set up on my pump I was in the doctors office all day setting it up eating and correcting. I hated it for so long. But at the end I knew it was working we’ll and I knew how to take care of it.
It is likely the cannula tho. That’s where I had the most troubles. U can try different ones maybe.
Timothy you are absolutely correct. Eating is required for survival so to call it cheating I really think puts things into the wrong perspective. Right now we have the Cleo infusion sets. The pump nurse put in a prescription for some new ones that go in at an angle. I don’t remember what they’re called right now but we’ll see. I know it must be something with the pump. Whether it’s the sets or pump malfunction. I’ve checked and rechecked the time and basal and bolus amounts. I’m sure that’s not it. If it was myself I wouldn’t worry so much. But I’m trying to control the chaos inside someone else’s body. Hopefully some time off the pump and new infusion sets will help. I really don’t want to give up on the pump but the ways things currently are continuing with it is not an option.
I don't think a "pump problem" means that your settings are wrong—I think it means that something must be wrong with the pump mechanically, the motor not working properly or something. Either that, or the infusion sets. I would definitely be calling the pump company and asking for a replacement, as well as trying different infusion sets.
When he started on the pump, were his insulin doses lowered at all? A lot of people require less insulin when using a pump, so doctors often lower it. But some, like me, actually require slightly more. Have you tried upping his doses to see if that helps?
It's also possible (though maybe unlikely) that it's something other than the pump. Is he in a growth spurt or entering puberty at all? Both can have a huge impact on insulin requirements.
Good luck! It's probably a good idea to go back to shots if he's running in the 300s constantly. I hope you do give a new pump and new infusion sets another try, though! There are some who the pump doesn't work for, but they are definitely in the minority. It would be a shame to give up without at least trying a few options. I've had my share of pump issues due to infusion set allergies and irritation, so I know how frustrating it can be when it's not working the way it should.
My first thought is infusion set issues. The pump fills the tubing fine so the motor must work. When he started his doses were lowered and then a week later he got sick. So up up up the doses went. He’s been well now for a few weeks and the doses are still up close to when he was ill. He is pretty thin so it makes sense the insulin in going into the muscle or too close to it. I just want things to be better. If I’m giving him injections to correct we might as well shelf the pump for now until we can plan a change of action. He is definitely not close to puberty yet. Thank goodness! And no major growth spurts. He’s going slow and steady. I don’t know if tandem will just send me a new pump but I’d like new everything. Maybe a new pump and a different type of infusion set is what he needs. Something’s gotta give!
Jennifer,
I'm so sorry you have had so many problems and I understand how frustrating it is. It took me some time to get the correct settings but the book THINK LIKE A PANCREAS helped me so much to go slowly one setting at a time.
I don't know if you have lots of guidance/help but maybe you could take a break and try again a little later. Please read the book if you haven't already. The pump is so wonderful I know that once you have found the good settings you won't regret it.
How terrible to have to go through all of this. What does his doctor say??? Wishing you a happy holidays,
I agree with mari, that maybe the pump is just too much for now, maybe you can try out a little later. it is important that you find the right therapy for him, and so maybe the pump is not IT right now.
i still hope that you have a wonderful christmas, take care!
Is this still the original pump? I'm surprised the pump nurse hasn't suggested you contact the pump company (or done so herself) for a new pump. Maybe you got a bad one. Does she work for the pump company or for your son's doctor? What does his doctor say?
I'm definitely checking out that book. I haven't read it yet. I'm very in tune with his body and know what changes to make on my own since I've been his primary care give since diagnosis. This situation baffles me since everything I am doing is hitting a brick wall. Right now the pump is in the box and we are waiting for a different type of infusion set to see if that will help. I always speak to the pump nurse. If there is a situation she just can't figure out she will go to the doctor. Unfortunately when I spoke with her yesterday the doctor was so busy with patients she couldn't be reached :/ The nurse suggested we try changing sites every 48 hrs vs 72 hrs but at bedtime last night (we changed sites before dinner) he was 338! So we are going to stick with injections for now....
Thanks, swisschocolate! Merry Christmas to you, too! We will figure it out. Just not today. I think its time to get out my patience and not try to rush fixing the pump situation. He has the option to inject instead and since that works just fine, although not as convenient, that's what we are going to do.
Kim, it is the original pump but he's only been on a pump for barely 6 weeks. I wonder if after all of her education and experience maybe the pump nurse has never dealt with a situation like this. I'm going to call Tandem myself. She works for the doctor so she deals with many different types of pumps. I know the t:slim is newer so maybe she hasn't dealt with many? I'm guessing here but when I talk to her she seems as stumped as I am about this roller coaster we are on. I always talk to the pump nurse first. She is the first line of contact. I'm going to call tandem and try the new sets when they come. It'll be after Christmas so we'll have a few days to catch our breath and not be so stressed out over this.
I love this site! I can come here and vent or whatever I need to do and I get the most wonderful, supportive responses so thank you for that. I believe my sons doctor is a good doctor. However, coming here and getting insight from others who live it is priceless. It frustrates me when the doctors office is stumped and can't offer solid guidance. I don't want to take his care completely upon myself but it seems that some things I will have to figure out on my own and let the doctor know the outcome. There's no rule that says I can't teach them something, right? I do know that there is something about this pump that is off. The pump fills the tubing so the motor must work. I've checked and rechecked the time setting and basal and bolus settings and those are all good. Does this mean there isn't a problem? Obviously not. I just need to figure out what this invisible problem is. I don't like problems at all but at least if they're obvious you can fix them easier. This guess work is not fun but I can't let the problem being elusive keep me from finding a solution so he can start pumping again. I've heard nothing but great things about the pump so yes I am a little disappointed I am struggling so much to make this work for him.
I'm sorry for your frustration, Jennifer. Have you spoken to tech support at his pump company?
Though there could of course be something wrong with the pump (which they could trouble shoot with you), more likely imho are one of two things: You are having problems with the infusion sets. (Did you have training in how to apply them?) or that you are merely in the learning curve of dosing on the pump. I say "merely" but actually the learning curve is fairly steep and it can take awhile before your settings are accurate for his needs. I totally agree with what you said above, that you have to take on a lot of his care yourself. We've all been there. Tweaking doses especially at first is a 24/7 thing and if you wait for a doctor call each time it will be very slow. My suggestion is that you keep careful records and look for the problem areas and begin slowly increasing basal rates and breaking it down into different time zones for his different needs throughout the day. Have you read "Pumping Insulin" by John Walsh? It will help you with this process. basal rates need to be set accurately before you can move on to I:C and ISF settings and basal rates are often what change the most in moving from MDI. Little by little, making small changes and then seeing what the results are, you will get there.
Zoe, I'm going to call tandem today. We got good training before he officially started using the pump. We did 3 days with saline solution. The sets go in fine. They are not loose and he doesn't have discomfort. My biggest issue is the inconsistency with his numbers. I have checked him every night for 41 nights straight at 3 am. This is his DP witching hour. One night, he's great at 130. The next, 290. The next 150. The next 200. You get the idea. How on earth do you adjust basal levels when you are like a crazy pendulum swinging out of control? I'm thinking it might be a combo of the wrong type of infusion sets and something wrong with the pump. I'll update when I get things figured out. :)
It may be something as simple as food intake at dinner time. Different foods will affect each one of us differently. Maybe his dinner isn't being absorbed until later on the nights he is running high. Or something along those lines. I know for me, If i eat a starch filled dinner, (we call them funeral potatoes around here)Potato casserole usually gives me high numbers 3-4 hours after I eat them. But soup or stew will raise my numbers within an hour.
The rise of numbers isn't that exact. You know he has a pattern of DP starting during the night, so that's something to work with. John Walsh says DP starts approximately 1AM, so in the case of the 290 it started the rise earlier than your 3AM time. With the 130, did it in fact rise later so he woke up high? I would start raising basal rates for the two hours before the rise starts, so say around 1AM and see the impact. Personally my gut tells me it's just you need to tweak numbers. "Wrong type" of infusion set" is uncommon if it's inserted right and "something wrong with the pump" certainly can happen but is less common as well. Needing to tweak doses for several weeks when you start a pump...that's VERY common. I recommend starting there.
We have. We've tweaked and tweaked some more. And I was checking him at 1am and he was fine and at 3am numbers were high so we increased the basal at 2am and still all over the place. He can eat similar types of food 2 nights in a row and have a difference of 150 or more points in his blood sugar at 3am from one night to the next.
You need to set the basal for two hours before the rise. So if he started rising, let's say at 2AM, you would raise the basal for midnight. Do you do corrections when he's high?
Yep, tweaking and tweaking some more is definitely what those early times are about. And just when you get it right it will change. Hang in there.