Hello my trusty diabetes friends!
My son has been on his t:slim for close to 3 weeks now. The first two were incredible. Such control! Such ease! We were coasting.
This last week has been the opposite. His pump was changed right before he left for school and he came back with blood sugars over 400. He chose to go back to pens for a day and then we friend again. When we tried again, it worked well for 12 hours and something happened in the early morning where it stopped working again. I am sitting here with a kid who has had sugars over 400 for the last 3 hours wondering what the heck we are doing wrong (we took out the pump, corrected, and once again he wants to take a break from the pump).
What the heck are we doing wrong? What is your process when you notice the pump isn’t working right? Like, what do you check first, what do you change, what do you try to redo?
The first thing I do is change the infusion site. And I mean also move to a different part of body as well… The second thing I do is try a different vial of insulin. I have seen bas sites, and had bad vials of insulin as well. The insulin was usually related to temperature changes that were not acceptable. I wonder if maybe the site type you are using is not ideal for your sons body type. The other thing I do is I use skin tac adhesive when I insert sites to help make sure they are not partially pulling out. I had multiple issues with the tandem sites partially pulling out in the beginning and learned I need to leave pressure on the insertion device for approximately 1 minute after insertion to make sure its properly bonded to the skin. Personally I have found that pumping provides a better level of control for me but it does introduce a level of complexity that is not present with MDI. Please if you have specific questions ask away. Jason
We’re in the same boat, @lucyinthesky827, so thank you for asking! We’ve tried every kind of infusion set they offer, and talked with countless reps, 4 DNEs, and 2 endos with no real insights into whatever it is that keeps going wrong (if it’s even the same issue, which who knows, right?).
It’s a dream when it works, though, so @jdiesel, thank you so much for the suggestions! If anyone else has more thoughts along these lines, please, please, please share!
Hi @lucyinthesky827 . I’m so sorry to hear about the issue tie sin is having. It’s not unusual to have to tweak pump settings new and then. I think people do usually have to adjust their basal rates and may have a few different ones during the day. I’m impressed it sounds like he was stable his first couple of weeks but for some reason this have since changed.
My DNE gave me a flowchart of instructions on what to do when you have high BGS - at what point to go off pump completely - your doctor might have one for you to refer to.
A couple of things I’ve discovered in my 5 decades with diabetes:
If I’m high, no amount of insulin will bring me down until I drink some water to wash out any possible ketones.
Bringing the numbers down takes time - it might take about 3 hours to even start to see a drop and in my case it starts off very small before I really see some movement. My inclination for a long time was to add a little more insulin, hoping to rush the process - that’s called stacking insulin. It did not move the start any faster, but once it did start working I dropped low. Waiting is the last thing anyone wants to do but insulin needs some time to do its job.
It’s certainly possible that it’s insertion of the infusion set. Unless you use the steel needle (which isn’t likely to bend) you could get a bend or kink under the skin. There are different types of sets - some go in at 90 degrees and others at 30 - and sometimes one works better than another. I find the 30 degree sets easier to insert and I’ve gotten less kinks - but that’s just me. I think you just have to try and see if that’s the case. You should be able to mix and match when you place your order - I’m trying something new with my next shipment - the rx is simply for sets that fit my TSLIM pump - not a particular kind. And if you check with Dexcom or your rep they may have some samples.
One last tip - you’ve been able to get his numbers back with injections. I’ve found that if my last resort injections don’t work, it’s likely I have an infection. I’ve gone to the doctor a couple of times and it’s turned out I had a UTI and that was the only symptom! And I’ve found that if those highs are accompanied by a mild toothache it means I should have gone to the dentist much sooner. Don’t ask how many root canals I have!
Wishing you the best with figuring out what’s going on. If you’re new to pumping check with your doctor about making any changes. A small change can make a big difference. In time you’ll be making them on your own.
Keep us posted!
Hi Lucy @lucyinthesky827 , at least your son had two successful weeks with his new t-Slim, so we can ALMOST assume that his pump is working. I said “almost”, because it might be possible that something, in addition to the infusion set which has been addressed above, has gone wrong with the pump - such as pump failure or cartridge not properly filled. I suggest that you actually see if the pump is delivering insulin; Disconnect the tubing at the point where it attaches to the part that goes into his body, and go into “Load” in the Options menu, and then “Tubing Fill” - see if insulin will immediately begin dropping from the tubing connector. You should be able to see insulin drops.
Another thought, to correct your son’s high glucose levels, you should use a pen or needle and syringe - CAREFULLY. Don’t overdose him and bring him into hypoglycemia. I have had very good management for over two years with my t-Slim, and tried three different infusion sets before settling on the AutoSoft 30 which I’ve used almost exclusively for more than 18 months.
Just a heads-up that it seems to matter who answers the phone at Tandem for whether they’ll let you buy different infusion sets or not. I had one person do it, no problem, but then two other times, they said I needed a “statement of medical necessity” from the doctor. Oddly, everyone agreed that the local reps can just give you a couple of whatever kind you want to try as free samples, but if you’re filling an order and paying for them, at least some customer service folks insist on a SMN first.
Perhaps it depends on your supplier or insurance then, so best to check. I don’t order through Tandem - I use an online supplier so the rules vary. Best option would be to get samples from your rep and try before you buy!
Hi just wanted to say I’m sorry your having issues. Our son has had the TSlim for almost two weeks and had the same issue with BGs staying upper 200 to over 300 for several days. The first thing I would say is be sure to push water to prevent keytones. The next would be to change the site. We’re using the Austosoft 90 infusion set and found our issue was with bent cannulas. We moved the placement from his stomach to his leg and have had much better results. You didn’t mention which infusion set but if by chance it’s the 90, I found careful placement with minimal pressure helped and also when I remove the round part that inserts the cannula, I pick it up by pulling from the middle and not by the round thing. I hope that makes sense…it’s kind of hard to explain in words but I found some good videos on YouTube explaining the proper way to install. I hope this helps and hang in there. I sure know how hard it is to feel lost with all this! We were diagnosed in April this year. I say we because it’s definitely hard on us T1D moms too! Prayers & blessings for your family.