Continuous Gucose Monitoring

pplprincess5480

Active Member
Messages
33
Hi Everyone,

I haven't been on here for ages but I don't seem to have any spare time anymore.

I was wondering if any of you had any experience with CGM. Lottie's BGls are all over the place ad she's been really suffering because of this. After trying everything, we are going to do 2am testing until Monday and if that gives us no help then she will have CGM put on on Tuesday. To be honest I'm up for anything that will let us get her back under control and maybe some sleep. I'd like to know how bad the actual attaching is as she's copes better when she's been prepared.

Thanks
 

Jen&Khaleb

Well-Known Member
Messages
820
Dislikes
Not having enough time. Broken sleep.
I've not tried one but I believe they are quite bulky. The attaching wont be a problem - not any more painful that what our kids go through day to day.
 

leggott

Well-Known Member
Messages
533
Hi. My son had a device fitted a few months back which was like a little pod which was attached to his bottom. it did not have a display, but logged bloods continuously for several days, The information could then be downloaded to see what his bloods had been over that period. Unfortunately there was an error and it didn't collect any data, but it was an excellent device and was virtually painless to attach and remove at the end of the trial period.
 

pplprincess5480

Active Member
Messages
33
Thanks Ladies,

I'm a bit nervous of anything new and I don't want to project that onto Lottie. To be honest though, anything that can give us an insight into what's going wrong is welcome. We've got hardly any control at all at the moment and we're all suffering because of it, Lotts must feel absolutely pants. She's not sleeping because her blood sugars are either too high or she's going hypo. We've tried all the options we can think of and have been in regular contact with her Consultant, who is a bit of a loss too, hence the CGMS plan. We've been asked to take BGLs at 2am as well to see what's happening in the middle of the night. It's so frustrating, every time we seem to get back to having good control something gets in the way, usually illness! Sorry, rant over, I needed to vent lol
 

leggott

Well-Known Member
Messages
533
Don't apologise for ranting! I totally understand your frustrations. Managing a diabetic child is not an exact science and you can get great results one day and next not so good even though you did everything the same.

We seem to go through periods where control is good and then others when their control is not so good! You are lucky to get a CGM as we had to really battle to try out this new device. As it failed to give us any answers I decided to stay up and become my own cgm! I tested my son hourly throughout the night on 2 occasions! it was a real eye opener though and it did give us some answers - even though I felt like a zombie the following day!

Hope you soon get some answers.
 

ruralweb

Member
Messages
20
Type of diabetes
Type 1
We started out with a medtronic veo with CGM which gave us BG readings every 5 min. For about three months I slept by my daughters side watching what was happening at night and found it very usefull - however it totally shattered me!

We gave up on CGM after that because it was too unreliable other for monitoring trends and my daughter found inserting it very painful. However I did find out that for her even a change of 0.05 units per hour could make the difference between going high or low.

In your situation I would test her every hour through the night over several nights/weeks to build up a pattern of what is happening. If she is drifting high on a test then raise the basal rate by .05 at a time and if she is dropping then reduce it - you will see that you can very finely control her levels in realtime (this is exactly what they are doing to test realtime basal CGM in trials). One tip is to alter the basal level in the hour BEFORE a rise or fall is seen.

Also remember to set the insulin sensitivity used to determine a correction dose as this can send her low during the night if a correction is give just before bed.

It WILL take weeks to get sorted but you will eventually get there - kids are always up and down and the worst times we have found are when she has teeth coming through. The thing to do though is only make perminent basal changes when you are happy nothing else is affecting the levels - most pumps have multiple basal programmes so use one of these for when she is ill etc then go back to the main one and carry on fine tuning til you get it right. But remember they are growing all the time so you will be constantly making small changes to increase basal rates at various times to damp out high points during the day.

The key is testing very regularly to catch the BG before it goes too high and you have to give a large dose of insulin to damp it down - once that happens you need to wait till the insulin has worn off.
 

Jen&Khaleb

Well-Known Member
Messages
820
Dislikes
Not having enough time. Broken sleep.
Totally feel for you with the illnesses. Khaleb is well now and has been for a few weeks but before that he was sick from March on off continously. Totally shattering being up and down through the night.
 

sophsmam

Well-Known Member
Messages
153
Our daughters had this fitted twice now if you get the chance to get one use it.you will get the results you want it's worth it you will see all her highs and lows.Sophie had her stomach numbed so it wouldn't hurt.She found no problems wearing it at all it was so worth it.