CGM users: How often do you have "no alarm" nights? [Archive]

joy orz

01-30-2010, 02:31 PM

To dream the impossible dream...:p
But I have to say that Ava's numbers have always been a mess overnight. Both on MDI and pumping. So now, I can at least sleep in between the alarms, rather than waiting up all night for the next time to do a finger check.

Also, you can change the range at night. Last night she went up a bit, I did a correction and went back to sleep, because I had tightened the setting to alarm me if the correction didn't work, or if I over corrected. Without the CGM, I'd be up all night watching the correction.

BrendaK

01-30-2010, 03:18 PM

Carson's been on the Navigator just about 24/7 for 9 months and we are FINALLY getting a lot of no alarm nights. Blood sugars at night are generally totally flat. I would say 4 or 5 out of 7 nights are no alarm which is a HUGE change from when we started CGMS.

hawkeyegirl

01-30-2010, 03:24 PM

It goes in spurts. Lately, lots of alarms at night. Sometimes, it's very rare to have alarms at night. But he has an ear infection right now and nights are a mess. I'd say if you average it all out, we go without alarms about half the time at night.

When the new MM pump comes out, we'll be able to set different alarm thresholds for different times of the day. When that comes out, we'll probably have more alarms, as I'll set nights for 130. Right now I don't change the high threshold at night, because I'll forget to change it back in the morning, and he'll alarm all day at school.

mph

01-30-2010, 07:26 PM

selketine

01-31-2010, 08:37 AM

I agree that it goes in spurts. We can often get 3-4 nights a week - if the is otherwise stable - which means not sick, we know the carb counts for the food (not on vacation, etc), and he isn't exercising more than usual.

Of course your question is not asking what we all set our high alarms to - which could mean that a person with a high alarm of 170 is waking up a lot more than a person with a high alarm of 200 or 220, etc.;) If the high alarms are the problem - I would set them higher to start - for the overnight - and gradually work your way down as your child stays more in range for night times. There is no sense starting out with a high alarm on the low end as you'll drive yourself crazy.

mom2ejca

01-31-2010, 11:24 AM

Of course your question is not asking what we all set our high alarms to - which could mean that a person with a high alarm of 170 is waking up a lot more than a person with a high alarm of 200 or 220, etc.;)

I had considered that, and it is relevant to the number of alarms you would have at night. But, it's irrelevant to the main reason I was asking the question. I get slammed every endo app't because of our night testing. Before the CGM because I chose to night test, and now with the CGM because apparently we have too many night alarms. It's really starting to make me :mad:. I was asking in direct reference to the claim that "it should be rare to have night alarms."

Apparently, with the CGM we are suppose to be able to watch for the trends over a 2 week period and magically set the basal so that we rarely have alarms:rolleyes:. I was given the impression that most people don't have as many alarms as we do. I suspect that our endo's office has a much smaller sample of cgm users than we do here at CWD. So, I was curious if we were, in fact, unusual in the amount of alarms we respond to at night.

FWIW, I'm not complaining about the number of alarms we have at night, and I have no intention of changing our settings. The alarms really don't bother me, I get up, do what I need to, and go back to sleep.

mph

01-31-2010, 12:03 PM

FWIW, I'm not complaining about the number of alarms we have at night, and I have no intention of changing our settings. The alarms really don't bother me, I get up, do what I need to, and go back to sleep.

This is very important. We all need to be satisfied with the # of alarms we are getting. If not.....the tool is not being used to our benefit:cwds:.

If your goal is a tight bg range with little deviation, then expect alarms. If your goal is to be able to sleep through the night soundly, then you may need a wider range some nights.;)

joy orz

01-31-2010, 12:15 PM

Jessica, this should make you feel better. I really love Ava's endo. She's type 1 herself, diagnosed at age 4. Whenever Ava's numbers go wonky and I ask her to come up with a magical solution, she just looks at me with that look :rolleyes: and says... "This is what D is. Give carbs or a correction and move on."

Ava's numbers are hard to manage overnight. The CGM isn't going to change that, but it is going to give me piece of mind that if I do fall asleep, the alarm will wake me up for a low.

Some kids may have nice flat basal needs overnight, but mine sure isn't one of them. Sounds like your's isn't either. You should ABSOLUTELY not be made to feel bad for checking, or taking action for an alarm. And if there is some magical formula to come with, why hasn't your endo come up with it? Hmmm? Isn't that what medical school was for?

(Ok, snarky response over... I'm a bit sleep deprived from responding to alarms all night. :o)

sarahspins

01-31-2010, 12:16 PM

I rarely alarm for any lows.. highs are another issue, but if I'm not having trouble before, bedtime, nights are usually reasonably stable.

It also depends on "what" I set my high alarm too... lately I've been leaving it at 280, because occasionally I'll spike up above 200 and I do come back down.. I'm still tweaking my basals... at this "stage" I would rather not wake up and correct it, because I want to see how to plays out so I can figure out what to do to fix it.

I know from experience that if I top 300 at night now, it's almost always a bad site or the cannula came out, something like that.. so having the alarm "on" is good, I just set it higher.

emm142

01-31-2010, 12:58 PM

If I am wearing the CGM "full time" (ie. for a month or so straight) I can get to usually about 5 "no alarm" nights a week.

selketine

01-31-2010, 01:57 PM

Well....if you set you alarm higher (which I realize you don't want to do) - then in theory the endo would be happier because you'll have fewer night alarms.

You should have titled you thread "how to magically set basal settings so cgms won't alarm overnight and child stays in perfect range" if that is the answer you REALLY wanted.;)

When William first started the cgms I was up constantly every night. Getting him in target was like landing an jumbo jet on a postage stamp - as I like to say - it just seemed impossible. Only during the summer when he was off from school and I could stay up late and sleep late did I really learn how to tweak him going into bedtime so that he was in a good range. His basals really were not the problem - it was getting the right I:C ratio and guessing the right combo ratio for nights he needed combos - much more likely for dinner than any other meal.

I think the other issue is that if I TRUST the current sensor - I don't always test for a high. This depends on numerous factors (how high, what the trend arrow is, what he ate, IOB, etc) - and I will bolus based on the cgms. This is not recommend of course - but it does cut down on the night time testing. I always test for lows. I'm very pro-active with the trend arrows and will try to catch future highs or lows by tweaking his combo bolus if one is running, or turning off the basal, etc.

So night alarms will not always = bg test. I think I might not be alone in this.....

Nancy in VA

01-31-2010, 02:22 PM

We can often go 5 nights a week without an overnight alarm. We had 2-3 days this week when she started going up overnight and that was new, so I'm now tweaking and still getting a little bit of one.

I had to tell my husband that the CGMS alarm isn't a SNOOZE alarm. It went off at 5:30 this morning and all he did was mute the alarms for an hour. He said, "but it was only 165". I told him that's what it is set at so I can stop her BEFORE she gets to 250, which is what she was when I realized he hadn't gotten up to test her.

s0ccerfreak

01-31-2010, 03:35 PM

I had to tell my husband that the CGMS alarm isn't a SNOOZE alarm. It went off at 5:30 this morning and all he did was mute the alarms for an hour. He said, "but it was only 165". I told him that's what it is set at so I can stop her BEFORE she gets to 250, which is what she was when I realized he hadn't gotten up to test her.

I had to laugh at that. I often turn mine off at night without even noticing I've done so; I hate for it to wake my roommate up. Sometimes I look at it and decide "I'm 80 or 175 and feel fine, i don't want to get out of my covers so i do nothing about it." I know not good

Flutterby

01-31-2010, 05:36 PM

I had considered that, and it is relevant to the number of alarms you would have at night. But, it's irrelevant to the main reason I was asking the question. I get slammed every endo app't because of our night testing. Before the CGM because I chose to night test, and now with the CGM because apparently we have too many night alarms. It's really starting to make me :mad:. I was asking in direct reference to the claim that "it should be rare to have night alarms."

Apparently, with the CGM we are suppose to be able to watch for the trends over a 2 week period and magically set the basal so that we rarely have alarms:rolleyes:. I was given the impression that most people don't have as many alarms as we do. I suspect that our endo's office has a much smaller sample of cgm users than we do here at CWD. So, I was curious if we were, in fact, unusual in the amount of alarms we respond to at night.

FWIW, I'm not complaining about the number of alarms we have at night, and I have no intention of changing our settings. The alarms really don't bother me, I get up, do what I need to, and go back to sleep.

I see nothing wrong with night time testing. If it makes you feel better, do it.. If it doesn't bother you, do it.. To bad if your endo doesn't like it.;)

Connie(BC)Type 1

01-31-2010, 06:14 PM

I shut the high alarms off at night, I need my sleep

Nancy in VA

01-31-2010, 06:28 PM

I'm sure the Endo didn't handle it right, but in many cases, you can use the trends you see in the CGMS to set your basals so that you can stay flat. We were doing a good job and she was staying flat most nights and then she started creeping up, so we're getting the alarms again. But I do think that a good benefit of the CGMS is that you should be able to get some pretty flat readings for a long period of no eating

ecs1516

01-31-2010, 08:00 PM

Since I have two children on CGMs this scews my answer. If I was voting for one child I would say 5 nights no alarms.

TripleThreat

02-01-2010, 05:31 PM

Since I have two children on CGMs this scews my answer. If I was voting for one child I would say 5 nights no alarms.

I second that there are 4 type 1s on CGMS so there is an alarm almost every night, but i would guess they wait at least 4 days before alarming again.

Rachel

02-01-2010, 08:12 PM

For us, the school time alarms are set pretty firmly. (I think I have adjusted them 2-4x since Nov.)

But the high and low alarms are set differently each night, depending on a variety of factors:

1) current bg at evening calibration (typically do + 20 off that number, if it is a good number)
2) food issues that still may play out (fat)
3) exercise or illness that may impact overnight numbers
4) whether I am testing new basal rates
5) how badly I need an uninterrupted night of sleep

The CGM is an amazing tool but I think of it as one that is serving our whole family. I have no qualms about sometimes just dinging the high alarm higher so I can sleep through the night ... or other nights I'll pull him in bed with us so that I can tweak things throughout the night without having to get out of a cozy bed. It is a balancing act that comes through confidence that I am doing the best I can, most of the time.

Maybe we need yet another acronym ... YAMV (your alarms may vary). :)

Momofsix

02-05-2010, 02:40 PM

mom2ejca

02-05-2010, 03:23 PM

My son is 6 years old he has had D almost one year now. I would like to know how old you have to be to get CGM and why some kids get them and some don't we have asked for one and said they don't help and he is too young.

This is very hard for me to deal with I wish I could get stong and I just can't take all the worry..
Please help me understand

There's no specific age... there are very young children-babies even, here at CWD with CGM's. My daughter started on a CGM at age 7, about 6 months after she was diagnosed.

Our endo at the time was very much on board with the CGM. I would guess that if you asked 3 different endo's you would get 3 different opinions about CGMs:rolleyes: If you think a CGM would be beneficial to you and your son, then I wouldn't let the dr's opinion dissuade you, even if it means changing endo's.

hawkeyegirl

02-06-2010, 03:48 PM

My son is 6 years old he has had D almost one year now. I would like to know how old you have to be to get CGM and why some kids get them and some don't we have asked for one and said they don't help and he is too young.

This is very hard for me to deal with I wish I could get stong and I just can't take all the worry..
Please help me understand

Some endos are just behind the times, frankly. Our endo isn't totally pro-CGM, but he willingly wrote the prescription when we wanted one.

Jack started on the CGM at age 4, and it is the major reason we do as well as we do. I would not want to go a single day without it.

In your shoes, I would demand a prescription for a CGM, and if the endo wouldn't give it to me, I'd find an endo who would. I would even travel a few hours to see an endo if that's what it took.

Best of luck to you! You are your son's best advocate, and unfortunately, you might have to fight a bit for him!

denise3099

02-08-2010, 02:05 PM

Oddly, a few yrs ago I asked the endo nurse about cgm, not knowing anything at all about it. And she said it was possible but they don't have enough units and there was a waiting list. (?) Didn't really understand what that meant and this nurse takes 20 minutes to tell you the time, so I said to put us on the list and let it at that. Some months later she asked if we wanted to do it. I said sure and, not understanding what was involved sent dd in with my mom. I thought she'd come home hooked up and I'd get instructions as to what to do--what was I thinking? The nurse scolded me. I must say that even a broken clock is right twice a day, because I still can't believe I just sent dd in with my mother instead of taking her myself. But it all happened so fast and they had one appt and said they'd have to go to the next person on the list if we didn't take it and I couldn't take off work.

Anyway, of course, it was not at all what I thought it would be. Further I didn't mean I wanted to TRY it, I meant I wanted to HAVE it. But they led me to believe that this wasn't avaialbe and that I could only try it through them. I hadn't done ANY research and had no idea about anything. But she led me to believe that owning a cgm system for your kid was not possible and didn't explain anything to me. And I didn't ask since I didn't know what to ask. When I asked about cgm, she didn't really explain anything but only that there was a waiting list and ins didn't usually cover it. She didn't say what it was like, or that there are different systems and that you could buy them or ins might cover it. Obviously I should have done my own research and went in informed and told her what I wanted rather than going to her for general info on cgm. But I was new and harried with a small child in tow.

My point is read these boards if you want to know about anything and THEN go to your endo and tell them what you want. :D

PatriciaMidwest

03-04-2010, 11:15 PM

"And if there is some magical formula to come with, why hasn't your endo come up with it? Hmmm? Isn't that what medical school was for?"

Love this...so true. I'm pretty sure our current endo doesn't have the forumula because he is still PRACTICING medicine. Someday he might just be done practicing and be ready for prime time. Maybe.

abrayome

03-05-2010, 02:27 PM

wow, maybe only once every couple of weeks. But her range is set pretty tight, so it's easy to be off.

and of course there was the night when she left the receiver under the covers. we didn't hear any alarms, but she was 330 when she woke up:o

zakksmom

03-06-2010, 03:16 PM

There wasn't a "next to never";).

It really does go in spurts. Some nights we get one alarm and other times we get a ton of alarms (tight range). Occassionally, no alarms (wider range).

It depends on activity, illness, fatty food, growth spurts, etc............:rolleyes:

The CGMS allows me to sleep BETTER/DEEPER/MORE SOUNDLY between the alarms because I know it will catch a problem.:cwds:

ABSOLUTELY worth it!!!!!!!!!!!!:)
Your response gives me hope for sound sleep- Wow, I can't wait!! Zakk was diagnosied in Oct- now I am lucky to get a two hour power nap in. We go live on the pump Tuesday and the CGMS shortly afterwards.. once we get a good grip on the pup of course! Thanks for hope!

Corinne Masur

03-17-2010, 10:09 PM

A very basic question - how do all of you HEAR the alarms???? My son is only one room over but we cannot hear the alarms - EVER. He's pumping with Minimed Paradigm. We just get up numerous times a night and check. Every night. Unless there's a straight line @ 110 after 1AM.

mom2ejca

03-19-2010, 12:17 PM

Some people have a radio shack microphone set-up that they put in the pump pouch. Baby monitors seem to be a popular option.

I'm a very light sleeper and my dd's room is next to ours. Most nights I don't have a problem hearing the alarms, unless she's laying on the pump. On the occasions when I don't hear the pump, the vibrate alarm will cause her to roll over (but rarely wakes up) and as soon she rolls over I usually hear the alarm.

Corinne Masur

03-19-2010, 08:25 PM

Thanks for the answer - but for adolescents - or almost adolescents (my son just turned 12) - don't you worry about invasion of their privacy?

hawkeyegirl

03-20-2010, 03:33 PM

Thanks for the answer - but for adolescents - or almost adolescents (my son just turned 12) - don't you worry about invasion of their privacy?

Corrine, have you thought about asking insurance to pay for a Guardian unit? We got one, and we can now hear the alarms at night, since it sits on his nightstand. It makes a BIG difference when it's not buried in a pajama pocket, under a bunch of covers. Just a thought.

thebestnest5

06-17-2010, 02:47 PM

Thanks for the answer - but for adolescents - or almost adolescents (my son just turned 12) - don't you worry about invasion of their privacy?

I think there is a blurry line of privacy invasion and night checking, kwim? It's not one of those easy to answer questions. The answer will be individual and based on many factors.

factor: illness = more checking; less privacy that night