My daughter refuses to wear a CGM. She was dxd 15 years ago so she fully understands HG A1C and the importance of maintaining tight control. She says that when she wears the CGM she becomes a number freak and does not listen to what her body is telling her. I respect that but her A1C's have all be over 8 for the last couple of years. For me - this is unacceptable. She is the one with the condition but I am the one who is thinking about the god forsaken long term complications. She is a serious athlete who needs to deal with all of those BS issues and she does a really good job with that.
So the question is - has anyone had experience with "CGM Refusal" and how have you either successfully or unsuccessfully dealt with it? Many thanks - Roger
Hi Roger, I’ve had T1 a long time, I can’t give you advice regarding convincing or hard selling something to your daughter, but I have a pump, and a CGM, I was previously on shots for 29 years, and I have had a1c’s way up the 12’s and in the low 6’s.
My opinion on CGM is they are great tools but the technology isn’t there yet for me. There’s the battery, there’s the transmitter, then there’s the warm-up and the calibrations, and the re-calibrations, and then there’s the warning on every cgm on the market: “Device is NOT a substitute for finger stick tests” and the false alarms, and the lost sensors, the weak signals… etc. The point is that the current CGM technology is not the end-all of modern instrumentation. I use mine for basal rate adjustments and for trending when I feel like it.
In my opinion, very satisfactory results can be achieved with 8+ finger sticks a day and aggressive insulin therapy including (if she’s not on a pump) mealtime and correction bolus shots. Based on my pump feedback, I’d be averaging 8 shots a day. I’d average way more shots and testing than that if I snacked.
I know your daughter must seem very young to you, but you may seem unyielding to her, so this could be a very sensitive issue. Maybe one thing you could do is to talk about just what is an acceptable a1c. maybe her goals are not too different from yours in that area, and maybe there’s a way of achieving common a1c goals in a manner that is acceptable to both of you. The ADA suggests that “good control” is at or below 7%, I have a personal preference for below 6.5%
I can feel your frustration; you don’t want your daughter to have complications and her current level of control is making you nervous. It’s still emotionally and physically a different perspective for those of us dealing with an incurable disease every day. I think working together would be better than being adversaries. As she grows, she will ultimately be 100% in charge of her health anyway.
Hey Roger, There may be other factors that are affecting your daughter's decision to opt out of the CGM. For example, my 14 year old hates having to wrangle pump placement so that she doesn't have an unseemly bulge under her dress. Also, tubing and hardware get in the way of summer activities like swimming or sports. That's why we switch to shots during the summer. Having all the gizmos hanging off your body "mark" you as a freak to anyone who doesn't understand T1. As a dad, I'm always amazed at how alien a teen age girl's way of thinking is from mine. Their logic flows at a totally different frequency. Maintaining good blood sugar control is only part of the equation. Maintaining a healthy body image is another.
~ Red
P.S. Thanks for bringing this up. You inspired me to post this on my diabetes blog, daddybetes today.
Joe - sorry it has taken so ling for me to get back to you - thanks for your very thoughtful response. You have given me a lot to think about. It is a perfect idea to try to set a mutual goal - one that we can both agree on. I think I will show her these posts as a way to get the conversation started. She is heading off to college next weekend. all the best - Roger
red - thanks for getting back to me. Courtney has never really had a problem with wearing the pump. She has certainly learned to put in some creative places when she dress up but she wears it year round without complaint. good luck and take care - Roger
hi Roger :) My daughter just started college so I want to wish you both the best of Luck !! Nice to see another parent that is watching their child take that big step in life.The d is something on our minds always-I know...but they sure make a parent proud-don't they ? :) Thanks for the post and the answers too..