I Guess This Really Isn't a "Discussion"

So we’re doing a “sensor study” with my 3 1/2 year old Type 1 Sweetie and there are some discrepancies between it and her meter throughout the day, which I expected. Bed time rolls around and I test her with her meter and calibrate the sensor before I put her to bed. I go about my evening and decide to check her sensor before I get ready for bed. She’s at 135 and dropping normally. Some concern because, if she continues to drop, I’ll need to wake her up and give her a snack. I’m prepared to set an alarm and check her in an hour or so. I check after I get ready for bed and she’s 75 and falling fast. Go downstairs, quickly fix a snack and get ready to wake her up. Get back up there and she’s 57! Then she’s 43 not a minute later. I RUN downstairs and get juice, wake her up out of a sound sleep (NOT easy to do) and get her to drink her juice. Grab her meter while she’s drinking, test her, she’s 117. WHAT!!! The juice is fast acting but she had drank MAYBE 2 oz within the minute it took me to sprint downstairs, set up her meter and test her (yes, I WAS moving that fast)…that wouldn’t increase her that much that fast, would it? 70 point difference? Is this normal? Not to mention the COMPLETE HEART ATTACK I HAD that she was 43 and falling fast according to her sensor.

Then another thought I had was, how many times does this really happen when I am not aware of it?

Ah, crap, they just need to find a cure like, YESTERDAY!

I have heard reports that lying on a CGMS sensor can give false hypo readings. Some have suggested that the weight of the body “squeezes” out the fluid between the cells from the area, so the sensor cannot get an accurate reading. I believe this is why some people won’t calibrate their CGMS until they have been up and out of bed for a short period, to give a chance for the intersital fluid to get “back to normal”

I have heard reports that lying on a CGMS sensor can give false hypo readings. Some have suggested that the weight of the body “squeezes” out the fluid between the cells from the area, so the sensor cannot get an accurate reading. I believe this is why some people won’t calibrate their CGMS until they have been up and out of bed for a short period, to give a chance for the intersital fluid to get “back to normal”

Sorry for the double post; my browser is doing weird things.

I have found those similar false lows, it does seem to correlate to sleeping with the sensor area crushed pinching off the interstitial fluid. It usually comes back with moving and a little massage of the area. I’ve learned not to panic with those sleeping CGM lows until I test Bg

Thanks for the replies…we’re just testing the sensor out for a week to get a better idea of what’s going on in her little body. Next time I won’t panic and I’ll test her with her meter first!

I agree 100%. I have had the GCM for over two years now…got mine when they first came out. I find the sensor much more accurate with highs. This is also important because the more highs…the more likely you are for complications down the road. She is still very young. The sensor does not always catch my lows but just viewing the arrows going down makes me aware to check, to check, check, check. This is how I established that if you are 500 and drop rapidly to 200 you still get the symptoms of hypo . It is ALWAYS the rate that you drop. Listen to body symptoms…I know if she is sleeping its not relevant. Being D for 55 years and no testing available I always relied on my body symptoms to tell me what to do. When when she is telling you she is low take it as gospel, and treat. I have always relied on my body symptoms to alert me of rapid changing BG’s. The sensor is great and is good as a “guideline” do NOT take the readings as gospel always check.
Sheila

I was using the Paradigm pump and CGMS and was having the same probs at night as your daughter with lows at night. Probably wasn’t a good idea at the time to do both that and the insulin pump at the same time - as I was having to relearn how to be a diabetic after 40 years of having it (since age of 7 ). AS others have said here - you should always confirm with the evil Vampire prick of the finger to make sure of the correct BG reading as the CGMS is not up to date (mine was 20 minute lag time). I was losing so much sleep with it alarming as well. I was not a nice person to live with during the few months I tried it out on a trial run. I’m pretty fortunate that with all the years of having diabetes that I still am hypo aware. Some of my friends who have had diabetes less don’t have that ability. I know when I’m dropping, and can sometimes go as low as 2.0 mmol / l (36 mg/dl) - and still be a somewhat rational person - but it’s not good on the old brain/etc.
Give it time - hopefully one day they’ll find a cure. I know I plan to donate my body to science when I die (hopefully at the age of 110) - if I can help in determining the what/ifs/buts - great!

Anna from Montreal - The Trials and Tribulations of a Diabetic

Dave, I have to disagree. For some people CGMs work very well. I prick my fingers only twice a day to calibrate. Almost always the difference between the finger prick and the 7+ readout is 10 or less. I always eat carbs based on CGM readout alone. I don’t have to give extra insulin because the CGM affords me excellent bg control.

We cannot yet rely on Dexcom. Example of one of our recent readings: Dex 124 flat; fingerstick 34. The 34 was not at all expected; no reason for it that I could see. Our Dex can drift off. Or seems to get stuck on a number. We still use fingersticks to dose and are still doing overnight fingersticks. Or ??? for hours at night. I think it is possible this may improve if we switch sensor to another site on her body. Dexcom is still very useful to us, despite the fact it is not accurate all the time. I wish we were able to dispense with more of the fingersticks… we have been able to dispense with some of them. It is possible Dex is not accurate due to user error (we are fairly new users) but can’t yet figure out what we are doing wrong. I would never dose or correct a high with insulin off a Dexcom reading; but have treated lows off the Dex without fingersticks though. Usually works, but sometimes Dex’s readings backfire. It still gives accurate readings a good deal of the time.

Yeah, since we’re only trying this for a week, I’m still testing with her meter at all the same times I normally would…it’s those weird times when it says she’s falling fast or that she’s low that freak me out. I pretty much panicked last night which is why I got the juice right away and then tested her with her meter. There’s something very disconcerting about “seeing” your sleeping 3 year old drop 30 points in 3 minutes.

She’s pretty much asymptomatic with hypoglycemia so the sensor has been really helpful re: seeing when she’s trending down. Tonight I was able to see that she was going below 100 well before the time I would have normally tested her for bed time, tested her to confirm it, got a snack in her and had an on-time bed time! That’s saying alot for a 3 year old who really knows how to work it to stall bed time…LOL

I don’t think we’re going to be trying to get this covered by insurance, though. It’s just been too hard on her. It really freaks her out and I need to be sensitive to her needs. It may make my job of controlling her blood sugar easier but it’s not making her life easier. If I have to work harder, so be it. But so far it’s been invaluable in helping me see how her body reacts to different foods and exercise. If that’s all we get out of it, that’s enough!

Thanks again, everyone for the great responses!

I called a couple months after diagnosis just to see if it would be covered and the person I talked to said it would be as long as the doc thought it necessary…our doc would let us have it in a heartbeat, I’m sure.

It probably would be a good tool for us to use to help control her blood sugar since she is quite variable but it’s been so hard on her. I guess she could get used to it but, at this point, I’m not sure I want her to have to. She’s only 3. Maybe I just get as much info as I can from this week and implement what I find out to the best of my ability until she’s a little bit older and not going through as much (she just started preschool last month after never being left by Momma anywhere but with Daddy…hard transition). She’s such a little trooper, though…we came up with the name “BootyPack” for the sensor attached to her upper booty/lower back. She thinks that’s hilarious! And it helps that she thinks the receiver is her own special little computer…

I like your posts Anna - after 55 years I am still getting hypo awareness…thank goodness. I would honestly say that 95% of the time I always wake myself up. Back “in the day” when we had no devices to test with, you had to rely on symptoms. Fortunately they always woke me up even from a deep sleep… A couple of times, when I had a seizure, the shaking of the bed woke my husband up (who is almost totally deaf). Husbands do come in handy, sometimes.
Sheila