CGM Feedback

[JSG]

Hi,

Looking for some advice from any existing CGM users out there.

We have two daughters aged 10 & 13. Both were diagnosed T1 in 2010, however, both are now on Animas pumps and have generally good control with HbA1c levels within the target range.

Last Saturday, our youngest had a very severe early morning hypo, which involved an ambulance visit, and we have since taken the decision to have them both on CGM's which we will have to self fund. We are hoping the CGM will give us additional data to help further improve their control, however, far and away the most important feature for us is the night time hypo alarm functionality. The Animas pump is not CGM ready, but it does have an alarm which can be set for reminders etc. However, the alarm volume is so low that it is sometimes inaudible even within the same room. If we take the plunge on a CGM which has the same problem, then it will be a disaster for us.

At the moment, we are looking into the DEXcom7, Guardian Realtime and the Freestyle Navigator.

We'd be really grateful if any existing CGM users could give us the benefit of their experience particularly in relation to the alarm functionality and volume.

We were also interested to read about the MySentry device. Our assumption was that this was only for the US, however, we now wonder if it could be used with the Guardian Realtime? Again, we'd be grateful for any feedback.

We are of course talking with each of the companies involved, however, real world user feedback would help us take a more balanced view as we look to make this critical decision

Appreciate any thoughts

JSG

 

[AMBrennan]

I'm using a Freestyle Navigator myself and generally very happy with it.

However, I think that, if the main concern is night time hypos, you really need a linked pump to automatically stop insulin delivery; the alarms are loud enough to be heard by the wearer but probably not loud enough to be heard from a different room (which I think is what you want based on the "inaudible even within the same room" comment); further, I'm not confident that they'd wake me at night (then again, I do sometimes sleep through alarms from my mobile that can be heard from flats in the adjacent building so...)

That's not a problem for me since I mainly got it to gather information to fine tune my insulin regime and achieve lower glucose levels throughout the day (I would not be confident to aim for 4.5 fasting if I didn't have CGM to exclude hypos) but I wouldn't recommend it for you (which doesn't mean that the other options are necessarily better of course)

The MySentry is probably close to what you want - I'd suggest calling Medtronic UK about (all companies make ordering CGMs remarkably difficult...)

 

[JSG]

Thanks for the prompt feedback... very helpful and exactly the kind of user insight we're looking for.

On the alarm volume issue, our idea is to have the device itself at the child’s bedside, but with a baby monitor alongside it and the other end of the monitor in our room with the volume up. Do you see any issues in doing this with the Freestyle Navigator device?

We're already on to Medtronic regarding the MySentry, and awaiting their response. We'll let you know how it goes.

Thanks again for your help!

Jim & Sue

 

[AMBrennan]

I'm not sure... I don't have any experience with baby monitors, at all - do they transmit continually? If not, I am not confident that the alarms (series of beeps, repeated until acknowledged by a button press) would trigger transmission.

 

[CarbsRok]

Hiya,
not to sure about this but don't think the my sentry is available in the UK.
Some of us were discussing the Freestyle Navigator on another forum and someone said something about it's been withdrawn or something similar in the USA.(Memory bad so can't remember what the problem is so do check) So do check out the situation and make sure there is no problem in the UK before you invest.

All the reports say the Dexcom 7 is the most accurate on the market and user friendly.

 

[AMBrennan]

Abbott is informing FreeStyle Navigator System customers in the US that the System is being discontinued in the US.
FreeStyle Navigator remains on the market in all other countries where it is currently available: France, Germany, Israel, Norway, Netherlands, Sweden and the United Kingdom. Customers in these countries who use the FreeStyle Navigator System are unaffected by the U.S. decision and can continue to use the System.

The U.S. discontinuation is not for safety reasons and Abbott will continue to serve FreeStyle Navigator System customers in the U.K.

Source, my emphasis

I have not had any issues with Navigator accuracy - continuous glucose is usually within 0.5 mmol/l of fingerstick BG

 

[CarbsRok]

Abbott is informing FreeStyle Navigator System customers in the US that the System is being discontinued in the US.
FreeStyle Navigator remains on the market in all other countries where it is currently available: France, Germany, Israel, Norway, Netherlands, Sweden and the United Kingdom. Customers in these countries who use the FreeStyle Navigator System are unaffected by the U.S. decision and can continue to use the System.

The U.S. discontinuation is not for safety reasons and Abbott will continue to serve FreeStyle Navigator System customers in the U.K.

Source, my emphasis

I have not had any issues with Navigator accuracy - continuous glucose is usually within 0.5 mmol/l of fingerstick BG

Thanks for taking the time and trouble to find the correct info. I had heard things from the USA boards, but had looked no further so good to know the Navigator is a still available in the UK.
Must admit to not hearing to much info about the Navigator can you give a run down on as in how easy it is to calibrate etc?
Many Thanks.

 

[zibi1]

Hi,

I started using a dexcom 7 plus a few months ago and it's incredible. It works really well and it's very accurate. Sometimes you may get a few readings off, but after a couple of months you know when these strange readings may occur. However, it's also true that thanks to the CGM you'll discover how inaccurate your standard monitor may be. Quite a few times I got my Accu-check Nano reading around 12 whilst my BG was really around 7!

Insertion is easy and absolutely painless. With a CGM on, it's basically impossible to get severe hypos. You'll still get some hypos, but you'll see them coming, which makes all the difference in the world!

Hope this help, i'll be happy to answer any other question!

 

[AMBrennan]

Calibration - the Navigator will beep 1, 2, 12 and 72ish hours after insertion and demand that you do a blood test using the built-in Freestyle meter; only issue is that blood glucose will have to be reasonably stable at those times for it to work (i.e. calibration will probably fail if done right after eating a meal).
Also, in some cases, calibration may fail repeatedly in the first 12h (I was told by Abbott that it's related to trauma at the sensor insertion site or something) - not sure if other CGMs are better. This has happened to me twice in 6 months.

 

[JSG]

Thanks again for all the feedback.

AMBrennan,

Baby monitors do work continuously and do not rely on any sound to trigger them into action. Very simple system... usually, one unit (the microphone piece) sits by the childs bed and the other end (speaker) sits by the parent. Whatever is going on in the childs room is communicated wirelessly through the speaker, and at a decent volume. So if the unit could be heard in the room, it could be amplified through the monitor. It sounds like this would work OK with the Freestyle Navigator.

Zibl1,

DEXcom7 is possibly our front runner at the moment and your comments are very helpfull. We're not expecting perfection, but as you say, the ability to see hypos coming will make all the difference in the world. Just one question for you. How about the alarm volumes on the DEXcom?

Thanks again for all your help, and for any other's interested, we will give a summary of our experiences with whichever system we finally go for

Jim & Sue

 

[CarbsRok]

Hi JSG,
just a thought for you, perhaps the CGM companies will allow you to trial their CGM's? I know Advanced Therapeutics do this for the Dexcom 7.

 

[Nicklenocky]

Advanced Therapeutics do indeed do trials for the Dexcom 7...they offer a 2 week trial which I did, though I must say I did return it afterwards

 

[zibi1]

The alarms volumes aren't terribly high. During the day, anyone would hear them. During the night however you may miss some alarms. For example, I always hear the three bips of a low, but sometimes I don't seem to hear the two bips associated with highs. However, I suspect that's my brain playing tricks on me; probably he prefers to sleep rather than waking up to correct a high

My partner on the other hand hears everything!! I know some people that put the monitor into a glass at night so that vibrations become very loud and it's impossible not to wake up. I've tried and it becomes really loud.

Finally, I don't think the alarm is loud enough to be heard in another room. But I think you're girls are already mature enough that their brain will be listening in the background for that 3 beeps!