Going “Untethered” (and Loving It!)

When we saw our endo in early January, we were excited to find out that Benny’s A1C has been exactly the same – and where we want it – for the last year. We’d been struggling with insets and higher numbers since he hit puberty, but since August of 2018 it’s been much smoother sailing.

What changed?

Two things: Tandem’s Basal IQ software and going untethered. I’ll talk a little bit more about Basal IQ but I want to focus mainly on untethered, which is the subject of this week’s podcast “minisode.” 

Untethered is when you use a long-acting insulin shot AND an insulin pump. It’s also referred to as POLI – Pumping On Long-acting Insulin. My first thought when I heard about this, years ago was: Why would anyone do this? It’s hard enough to wear an insulin pump, and the pump is supposed to take away the need for shots.

Here’s what changed my mind. Benny’s insulin needs went way up around age 10. By age 12 all of his basal rates had doubled and they doubled again by 13. We were changing pump cartridges every two days instead of three and insets just wouldn’t last. It wasn’t just that we noticed higher blood sugars, which  indicated there might be an inset problem. We could actually see the insulin leaking out!

As so often happens, the answer came from the community. A Facebook D-Mom friend suggested untethered. We talked to our endo and he agreed that Tresiba (a newer long acting) was a good option. After the first month, we saw enough of a difference that B wanted to keep going. We adjusted slowly and by three months his A1C had come back to pre-puberty levels.

You can hear more about why I love untethered – and why it’s not just for teenagers – in this week’s episode. It’s less than 15 minutes long and there’s a transcript here if you prefer to read. Otherwise, just click the play arrow below.

As for Tandem’s Basal IQ – it’s a bit tricky to use when 40% of basal comes form a shot. The pump software has no idea how much long acting is on board. We talked to our endo and educator and decided to try it anyway. We do treat more lows than I would assume most using Basal IQ do. Even so, a quick look at Dexcom Clarity shows Benny was low 2% in the last 90 days and spent less than 1% of time with urgent lows. So I’d say even thought it’s sort of got one hand tied behind its back with us, Basal IQ is doing its job.