Dexcom/Tandem

[Adam 48]

Hi all, just after a little advice. My daughters Tandem was linked to her Dexcom yesterday morning. All went well throughout the day, she put the sleep profile on at 10.30, but at 5 o clock this morning she had an alarm saying her bloods were going low and to have some carbs. She had some gluco juice, went back to sleep and her bloods were fine when she woke at 8 this morning. As its early days, I don't really want to ring the Diab team. Any thoughts on why/how this may have happened? Or just put it down to one of those variables?

Thank You

 

[Pumper_Sue]

Hi all, just after a little advice. My daughters Tandem was linked to her Dexcom yesterday morning. All went well throughout the day, she put the sleep profile on at 10.30, but at 5 o clock this morning she had an alarm saying her bloods were going low and to have some carbs. She had some gluco juice, went back to sleep and her bloods were fine when she woke at 8 this morning. As its early days, I don't really want to ring the Diab team. Any thoughts on why/how this may have happened? Or just put it down to one of those variables?

Thank You

It's called diabetes. 🙂
We are human not machines so will never have perfect control and having a new toy to play with takes a while to settle down.
Always check with a finger poke as the Dexcom is very fond of telly porky pies regarding some of it's readings.

 

[Adam 48]

It's called diabetes. 🙂
We are human not machines so will never have perfect control and having a new toy to play with takes a while to settle down.
Always check with a finger poke as the Dexcom is very fond of telly porky pies regarding some of it's readings.

Thank you for your reply. Lol, I understand what you say, we are only human, but we're two years into this and I still want to know all the whys and wherefores! I'll tell her to finger prick if it happens again. My following app isn't doing its job during the night and I don't understand why? I leave my WiFi on, my daughter has the app running on her phone, but nothing?

 

[Pumper_Sue]

I leave my WiFi on, my daughter has the app running on her phone, but nothing?

I know with my phone emails/notifications are silenced between 10pm and 7am. Dex does create though, so I'm wondering if as you are a follower if this has happened? I'm tot non tech and my smart phone outsmarted me from day one 🙂

 

[Adam 48]

I know with my phone emails/notifications are silenced between 10pm and 7am. Dex does create though, so I'm wondering if as you are a follower if this has happened? I'm tot non tech and my smart phone outsmarted me from day one 🙂

No, not too techy myself! I've checked the notifications, all seems fine? Thank you Sue.

 

[Sally71]

If she was lying on the sensor during the night that can cause it to read low. Or it could just be one of those things, that’s diabetes for you!
Don’t know why you aren’t getting Dexcom data during the night, does your daughter leave her phone close enough to her? It picks up the sensor data via Bluetooth so needs to be within 6 metres of wherever she is. Then uses the wifi to transfer that data to your phone.

 

[Adam 48]

If she was lying on the sensor during the night that can cause it to read low. Or it could just be one of those things, that’s diabetes for you!
Don’t know why you aren’t getting Dexcom data during the night, does your daughter leave her phone close enough to her? It picks up the sensor data via Bluetooth so needs to be within 6 metres of wherever she is. Then uses the wifi to transfer that data to your phone.

Yes, she could be lying on it, and she leaves her phone, BT and WiFi on by the side of her bed. I'll have a look on her phone settings? Easier said that done, it's permanently attached to her hand ;-) Thanks Sally

 

[Sally71]

That sounds like a good idea, i know you can turn the alarms off at night but I didn’t think it stopped the phone sending the data out for yours to pick up. I think my daughter has her Dexcom alarms turned off at night on her phone (because pump will alert her to any problems) but I still get the data. Occasionally it drops out for no obvious reason, usually comes back within a few minutes though, i’ve never had a whole night missing unless the sensor ended and we forgot to change it!
Oddly there also seems to be one classroom at her school where her phone can’t pick up a data signal, I always know when she’s had a maths lesson because I get a hole in the Dexcom graph

 

[Thebearcametoo]

My daughter’s alarms are turned off at night but we use Sugarmate to bypass the phone’s do not disturb on ours so we get an automated phone call if she’s hypo. Sugarmate is also useful for a back up to your follow app. You can set different alerts so that it texts or phones for different figures. If you look at the graph for the night and see if she was going down over an hour or two then it’s a proper hypo. If she suddenly drops and it shows hypo then that’s the sensor not getting enough fluid and just turning her over will sort that out (it can take a while and it’s fine to treat as a hypo too). If she’s having hypos overnight on a regular basis then you can change the basal with help from your team. If it’s not easy to get hold of her team just put her on a temporary basal at 90% for 12 hours overnight until you can talk to them.
It will take a bit of fiddling to get the pump right. Linking it to the Dexcom means you get lots of data and so you can her team can then make adjustments. With kids you think you have it right and then they grow and you have to alter it all again. You’ll get the hang of what changes need making. We probably do about 2/3rds of the changes ourselves now and check with her team for the others.

 

[Adam 48]

My daughter’s alarms are turned off at night but we use Sugarmate to bypass the phone’s do not disturb on ours so we get an automated phone call if she’s hypo. Sugarmate is also useful for a back up to your follow app. You can set different alerts so that it texts or phones for different figures. If you look at the graph for the night and see if she was going down over an hour or two then it’s a proper hypo. If she suddenly drops and it shows hypo then that’s the sensor not getting enough fluid and just turning her over will sort that out (it can take a while and it’s fine to treat as a hypo too). If she’s having hypos overnight on a regular basis then you can change the basal with help from your team. If it’s not easy to get hold of her team just put her on a temporary basal at 90% for 12 hours overnight until you can talk to them.
It will take a bit of fiddling to get the pump right. Linking it to the Dexcom means you get lots of data and so you can her team can then make adjustments. With kids you think you have it right and then they grow and you have to alter it all again. You’ll get the hang of what changes need making. We probably do about 2/3rds of the changes ourselves now and check with her team for the others.

Thank you for that, we shall see how she is tonight. She has just had a hypo, 20 minutes after having food. The pump gave a warning that her bloods were 5.1 and would drop to 3.9. We didn't do anything at this stage, as the diab team said to put your full trust in the system and not to intervene? The insulin stopped at this point, but she dropped to 4.1 and we were then told to give carbs? Bit confused to be fair, I know it's early days, only day two, but may ring the nurse tomorrow.

 

[Thebearcametoo]

It will take a while for everything to settle. Try to relax about it. Without the alarms you would only know she was hypo is she felt it or you were due to test. You don’t have to respond immediately (unless it’s really low). You can afford to wait and see what happens when the pump cuts out and treat 15 minutes later if you need to. It may be that some of the algorithm needs adjusting but that will become clear over time. We’re dealing with hypos tonight too. I think because she was running around this afternoon after being very sedentary for a week or two ‍♀️

 

[Sally71]

Thank you for that, we shall see how she is tonight. She has just had a hypo, 20 minutes after having food. The pump gave a warning that her bloods were 5.1 and would drop to 3.9. We didn't do anything at this stage, as the diab team said to put your full trust in the system and not to intervene? The insulin stopped at this point, but she dropped to 4.1 and we were then told to give carbs? Bit confused to be fair, I know it's early days, only day two, but may ring the nurse tomorrow.

If she is only dropping slowly the pump will turn basal off and that will be enough to bring her up again and you won’t need to do anything. If she’s dropping quickly though just turning the basal off won’t be enough and she will need sugar. I tend to wait a while and see what happens, if it stabilises and starts to come up again without me disturbing her then that’s great, it becomes obvious fairly quickly though if that isn’t going to happen.

 

[everydayupsanddowns]

Are you using Dexcom Share @Adam 48 or something else?

I’ve not set it up, but Dex occasionally asks me if i’d like to.

Frustrating that the tech isn’t working as you’d hope.

Keep an eye on things over the next few days, and if it is a downward dip overnight maybe consider a basal tweak? I find it helps sometimes to check the pump history to take a look at what automatic adjustments have been necessary overnight.

 

[Adam 48]

Are you using Dexcom Share @Adam 48 or something else?

I’ve not set it up, but Dex occasionally asks me if i’d like to.

Frustrating that the tech isn’t working as you’d hope.

Keep an eye on things over the next few days, and if it is a downward dip overnight maybe consider a basal tweak? I find it helps sometimes to check the pump history to take a look at what automatic adjustments have been necessary overnight.

We are using Dexcom follow, I think we are somehow losing connection, when both phones are locked? I'll do more fiddling with the settings!
Is there a way of quieting the alerts on the pump? After my daughter had a hypo after food last night, she then rebounded and went high. Pump was giving corrections and sounding the alerts. Erin having the hypo, then going high, then the constant alerts...i don't think the alerts were helping! I don't want to sound to down about it, I think when up and running properly for us, it will be a game changer. But, we seem to be lurching from lows to highs and vice versa at the moment, with constant alarms, which is upsetting my daughter.

 

[everydayupsanddowns]

We are using Dexcom follow, I think we are somehow losing connection, when both phones are locked? I'll do more fiddling with the settings!
Is there a way of quieting the alerts on the pump? After my daughter had a hypo after food last night, she then rebounded and went high. Pump was giving corrections and sounding the alerts. Erin having the hypo, then going high, then the constant alerts...i don't think the alerts were helping! I don't want to sound to down about it, I think when up and running properly for us, it will be a game changer. But, we seem to be lurching from lows to highs and vice versa at the moment, with constant alarms, which is upsetting my daughter.

Yes, alarm fatigue is definitely a thing. And for a piece of tech that can feel like it’s actively helping you at times, other days it just feels like it’s nagging you the whole time.

There are settings you can alter under MyCGM > CGM Alerts many of which you can turn off.

I have most of the alarms on the pump, rather than on my phone. Having double alarms was a real nag-fest!

Those days when you lurch from low to high are really draining. Both physically and mentally. Do remember the lag when treating lows. If you’ve treated and you are watching the trace still descend, it is showing you what happened 10 minutes ago… and her BGs may already have turned the corner. The 5 min delays between Dex data updates can feel ridiculously long when in hypo recovery too. Overtreating is a real risk, which can bounce you between the extremes.

 

[Adam 48]

Yes, alarm fatigue is definitely a thing. And for a piece of tech that can feel like it’s actively helping you at times, other days it just feels like it’s nagging you the whole time.

There are settings you can alter under MyCGM > CGM Alerts many of which you can turn off.

I have most of the alarms on the pump, rather than on my phone. Having double alarms was a real nag-fest!

Those days when you lurch from low to high are really draining. Both physically and mentally. Do remember the lag when treating lows. If you’ve treated and you are watching the trace still descend, it is showing you what happened 10 minutes ago… and her BGs may already have turned the corner. The 5 min delays between Dex data updates can feel ridiculously long when in hypo recovery too. Overtreating is a real risk, which can bounce you between the extremes.

Thank you for that. We have now switched off the phone alarms, and have put the CGM 'high' alarm on low, may put that off during the day and back on when she goes to bed? The frustrating thing with was that she was just above 12, correction was going in, but the alarm keeps going, when we know there is an issue and it is being dealt with! Like I say, I don't mean to moan about it, I feel we're very lucky to have been given this tech, it's just going to take some time. I spoke to the nurse this morning and she said to carry on with non extended boluses for meals until we see a pattern? Again, we have to go with what they say and see how it goes.
Thank you all for your replies.

 

[Pumper_Sue]

We are using Dexcom follow, I think we are somehow losing connection, when both phones are locked? I'll do more fiddling with the settings!
Is there a way of quieting the alerts on the pump? After my daughter had a hypo after food last night, she then rebounded and went high. Pump was giving corrections and sounding the alerts. Erin having the hypo, then going high, then the constant alerts...i don't think the alerts were helping! I don't want to sound to down about it, I think when up and running properly for us, it will be a game changer. But, we seem to be lurching from lows to highs and vice versa at the moment, with constant alarms, which is upsetting my daughter.

You can change the settings for how often the alarm goes off 🙂
I know you are frustrated but as I always say Rome wasn't built in a day, so take a deep breath and chill 🙂

 

[Thebearcametoo]

We don’t generally correct a high overnight (unless we’ve changed a cannula set late and it’s to do with that or if she’s ill) so we don’t use high alarms overnight. If I wake up in the night I glance at my phone to just check where she’s at. We only have high alarms on our phones (set at 14 or 16 depending) as we correct them at meals so it’s one less thing for my daughter to be bombarded with. The only alarms on her pump are for hypos as a back up to her phone. Until recently we dealt with all her hypos anyway so it would have been fine to turn her phone alarm off too and just leave the pump one but she’s now doing her own treatment mostly so has both on to help cut through the YouTube noise or whatever I set a reminder on my phone to check 2 hours after a pump change so will spot highs then if the set has failed. When your daughter’s at school you may want high alarms for her then so she can be alerted if her pump set isn’t working but during then holidays you may find you can live without them.

We started with all the alarms but all got fed up very quickly so have pared it back to the minimum that works for us.

 

[everydayupsanddowns]

You can change the settings for how often the alarm goes off 🙂

Ah yes! that’s a really important setting @Adam 48 - The default ‘repeat’ (the point at which the alarm reminds you again) was very short, and far quicker than my levels would begin to come down after a correction. I actually have mine set to ‘never’, because I also get CIQ reminders at lower levels, and that’s plenty!

 

[Adam 48]

Thank you all, I've changed all the alarm settings, reminders etc, so we're much happier...and Erin's having a good day BG wise, between 7 and 9 since she woke at 8 o clock!