Pumplette has developed an expensive habit. It started in the summer, way back in June, when her life was full of musicals and stage appearances. It was supposed to be a one off. An experiment. Just to see what all the fuss was about. But one led to another and another and then another, and before we knew it, she was hooked.
We as her parents have facilitated this habit. It isn’t cheap or for the fainthearted. However, the confidence and liberation this habit has given her have been utterly priceless to us all. I am, of course, talking about her use of the Dexcom continuous glucose monitor (CGM). She now has about six months experience with CGM more or less continuous, and her response to it has far exceeded my hopes.
The first sensor we used was to give us both peace of mind whilst she was involved in a professional production for a week on stage. A huge unknown for us was to be her reaction to adrenalin whilst she was performing. I didn’t want her to have to be constantly checking her bgs whilst with her friends whenever they weren’t on stage, and CGM seemed to be a sensible solution to our predicament as it would also provide her with trend arrows which she found invaluable when making decisions before going onto the stage. I will admit to being slightly concerned about her becoming fixated on her bgs once all rigged up, but I can honestly say that, after the initial novelty wore off, she has used it like any other tool she has to manage her T1, sensibly and without obsession!
It came as something of a surprise to her hcps when she came skipping into clinic 6 weeks after she started using the Dex. They were concerned that she would become too dependent upon the information that was being streamed 24/7. They also looked nauseous and closed their ears when it came to us confessing how we could extend the life of a sensor from 7 days to 6 weeks! But we were able to allay some of their fears – not the extended sensor life one, that will always be a sticky issue! – but chiefly her robust mental attitude to the information she now had and her talent to interpret it to make her life more care free. That quarter, her HbA1c reduced by 0.5% despite a huge growth spurt resulting in about 2cm increase in height! The following quarter saw a further 0.1% reduction and that included back to school, a residential trip abroad, and yet another growth spurt……(she’s rapidly catching me up!). These results have only been possible because of the continuous flow of information we now have from the Dex. Without it, she’d still be checking her bloods about 10 x a day in order to obtain the results we had pre Dex. Now her fingers are much less battered and yet she has more information than ever before and uses it to keep herself well.
The only trouble is, this habit is costly. We are exceptionally fortunate to be in position where we are able, just, to fund this for her. But I know of too many other parents who’d love to have this luxury too. And that makes me sad and a little bit guilty.
It also makes it very tricky when it comes to keeping supplies. We haven’t been in a position to keep a spare transmitter in the supply cupboard – at nearly £400 each they aren’t items we can stock pile! However, I knew that the Dex gives a low battery warning when it was nearing expiration. Consequently, when the warning alarm happened whilst I was working away, I wasn’t too worried as I figured there would probably be a week’s grace. Um, no. It was actually less than 48 hrs later that I receive a call from school to say that the Dex had died. As ever, Pumplette took all this in her stride, but I couldn’t help but feel I’d let her down. The new transmitter was still 5 days away and I wasn’t going to be returning home for two more days. The Dex had really helped her confidence whilst I was away and I felt the level of responsibility for her ramp up again as she had to remember to check, check and check regularly.
When she was replumbed with the new Dex after a week without it, she confessed that she’d missed it. She hadn’t moaned about not having it once, and indeed, I wanted it to be her choice as to whether or not she went back on straight away or have a longer break. She voted with her arm and Dex is now firmly back in all our lives. It would seem that with continuous usage we are only ever going to manage to get 6 months out of a transmitter, but happily, she has a birthday in June and Christmas in December, so we can think of no better presents for her to receive!!!
This is one habit we’re all more than happy to live with!
we would love a cgm – you are right – it is a bizarre system that allows some access and some not, we are on a waiting list but for a rusty old version that doesnt read as it goes…. Glad to see it is going so well for you x
Argh! Blind cgm! We absolutely hated it, as it was really only useful if your record keeping notes were tip top!!! (I have always been inherently tardy in nature! Not the best trait for a mother of a cwd to possess!)
Having been part of some of the peer review teams assessing paediatric diabetes clinics, I’m even more aware of the vast differences in approach to their usage than ever before. Slowly, slowly, we will get there though! If I have to tick off one clinician at a time!!