I am SO at a loss. I posted a while back about my DD's insulin needs dropping by more than 1/2 over the span of about 1 month. Endo was concerned - did some bloodwork for hyperthyroid, celiac. All normal. Now, about a month after that, and two months after her needs dropped dramatically, they are increasing daily. She's not sick, and this has been going on for about 3 weeks, so I don't think it is that she is sick. She has more than doubled what she is taking, and we are still working up on some of her doses, and still in the mid teens for a good chunk of the day! What the heck? I know some variation is normal, and some adjustments with growth, change in activity etc. But doses changing by 2 or 3x on a regular basis??? Does that happen to anyone else? Can TDD change this much just from a growth spurt? In case it matters to you - she is 4 years old, pumping on the Ping, we use Dexcom, and is on Apidra. Her TDD at the moment is about 20 units (and still going up). Was at about 9 units this time a month ago.
What was her TDD before all the swings started? It does seem like a lot of variation but it's hard to know for sure. It looks like you have a strong history of auto immune disease so I might pursue that more. I think celiac tests can give false negatives?? Or maybe something else is at work? Did they cheçk for UTI/kidney infection in case there is something like that going on that is non symptomatic?
Are you sure it is not the pump? I remember someone posting here a long while back that this same thing had happened and it ended up being a bad pump. I'm almost sure it was Animas too. Maybe someone else remembers more? I think in your shoes I would be calling Animas for a loaner pump and try it out. Don't they still loan them for vacations?
Loaner pumps come in a sealed package. if you open it, you own it. They will charge you for the loaner unless you send it back unopened or you send them your malfunctioning pump under warranty.
Thanks for that info Tina, I had no idea. What about troubleshooting with Animas though and telling them you don't think that the pump is delivering right? Is there a test with Animas similar to Minimed where they test the pressure?
yes I think needs can change this much from just a growth spurt.. Our most terrible times were with teething... did she get some new teeth at all?
I was going through something similar with my son recently. I believe the culprit for us was that we were overusing the same site locations. He started to get more frequent hard lumps and some infected sites. I completely stopped using that site location and rotated around his body more. I also changed the type of sites he was using. All this seemed to resolve the issue for us. Another time I can remember pulling my hair out is when we were getting lots of bubbles in the line. I learned how to get rid of bubbles and this helped resolve things for us too. During growth spurts, my son can need up to 50% more insulin.
My son is 4 yo - I see differences in TDD and try to recognise some patterns that change I guess every two weeks but I haven't seem such big changes as you describe... My son is quite small and weights 16 kg, his TDD is ussually around 8-10 units, on some days it can reach 12 units. Max we reached was 16 units but that was due site problems so I guess he didn't get it all counted by pump. In your situation I would assume maybe it is site overuse, pump problems or maybe something else is going on? It is very strange TDD to change so drastically by all 100 percent and IMHO it has to be something else that natural fluctuations...
Thanks for all the input everyone. I am concerned there is something else going on - don't know how much to push the celiac thing or other testing ... don't want to put her through something she doesn't need to. She is about 21 or 22 kg. Pre this craziness, was on around 10units/day. Now basals alone are over 9 units/day!! And the night time ones we are still working up on. Sites - I'm not too concerned ... we just started pumping 6 months ago, only had diabetes for 1 year. We use arms, bum, hip, thighs, tummy ... and rotate... can't feel any hard spots, and never put a site near a recent one...? Perhaps I should try a different type of site? She uses the comforts right now... which had been the most reliable for us previously.... Re: the pump... if I haven't gotten any errors, I'm not sure they would do anything if I call??? She's never had ketones during all of this - so shes clearly getting insulin...
Maybe it's jus insulin issue? How often do you change it? Because I remember when we used Humalog I noticed it started to loose its potency on day 3-4, Novorapid lasts at full potency for us for 5-6 days. I'm not familiar with Apidra (just very interested yet) but as far as I know you have to change it very often? Maybe I'm wrong but I guess you know that sometimes reason of the problem can be very simple
I could try changing it more often... but if it was that wouldn't I notice her sugars good for the first day or two, then start to creep up? Or maybe I should go back to humalog for a few days and see? (I don't want to - I LOVE apidra so much more... but... if it could be an insulin issue???)
As I remember when using Humalog I couldn't understand at first what is going on when usual doses didn't work like usual until I once tried to change insulin in cartridge. As I see you CGM so you could just see at all data and compare. For my son Novorapid (Novolog) works much better than Humalog - somehow I find it to be faster and we have far less site problems. I remember reading somewhere that Apidra has to be changed in a pump every 3 days, is it right?
My son is at a different age from your daughter, 12 yrs, entering puberty, so I am not sure how helpful his experience is but he also has big fluctuations in insulin needs that seem to be related to activity levels. During school term (1-2 hours sport each day) TDD about 32 u and during holidays increases by 50% to 45u (weight 45 kg) when he is less active and has more treats. Each holiday I think it must be growth related or poor site selection etc but then as soon as school starts again, have to go right back with the insulin so I have accepted for now it is related to activity. Were their perhaps changes in your daughters activity levels? Also perhaps she is coming out of honeymoon now, and the previous drop in insulin requirements was her honeymooning? In our first year my son dropped TDD from 18 u to 5u over some months then went up to about about 20u over the next few months.