Maybe I suffered some sort of PTSD after our CGM experience in Spring 2009?
I don't know.
Perhaps I was SO INCREDIBLY let down? Or traumatized from seeing her struggle with tears in her eyes because she perceived we were hurting her? Consumed with guilt for forcing the issue? Frustrated that we didn't have an opportunity to trial it first and, instead, had to use our ONE AND ONLY CGM approval for the LIFETIME of the policy? Ticked off at the school situation and the fact that IT was the reason we were even considering a CGM in the first place?
Whatever it is...or was...I've been left with some serious CGM reservations.
I'm reserving my "position statement" regarding the Dexcom 7 Plus until after our trial is over (Tues, 12/7/10). I want to give a complete assessment of our entire experience. My opinion is subject to change with any given blood sugar reading (as it always seems to be, generally speaking), so it's important that I figure out how **WE** feel about it overall before I try to write up an honest post regarding our point-of-view.
In the meantime, however, I want to be honest about some of the CGM concerns I have. Admittedly, I'm hoping the vast knowledge and experience from my readership -- ESPECIALLY PWD'S WHO HAVE FIRST HAND CGM EXPERIENCE -- will help me put some of them to rest.
Now don't laugh...but...in no particular order...here goes...
1) INSURANCE!!! What if our new policy pulls the same thing? Only ONE per lifetime and NO SENSOR REFILLS? I should note that our old policy didn't inform us up front about the sensor issue. We knew it would be the only CGM device they would pay for...but we didn't find out they wouldn't refill sensors until after the fact. We've since switched insurance companies, but not employers. Thus far, all the fine print appears to be the same...meaning the level of benefit has not changed at all....we may only get ONE shot at this and then we could end up fighting for sensors to continue using it.
2) REAL ESTATE!!! She's a kid who has already been pumping for 4 years. Her subcutaneous tissue needs to continue absorbing subcutaneous insulin for a LONG time yet to come. While we're faithful about rotating sites, having ANOTHER apparatus to rotate means using twice the amount of real estate. I don't want to risk infections and/or scar tissue to precious areas that could be used for insulin administration later.
3) HYPOGLYCEMIA AWARENESS!!! It's taken a few years, but Sugar is able to detect her lows REALLY well. There are times, however, that she isn't exactly sure. She just feels as though something is wrong. Sometimes she thinks she's low because she's feeling very hungry, or anxious, or she's actually high. She **HATES** interrupting life to deal with diabetes - ESPECIALLY if she's playing with a friend. I'm convinced there are times she tries to talk herself out of feeling low, because she just doesn't want to stop playing (can't really say that I blame her.) I'm worried that she'll stop paying attention to her body's cues and, instead, rely on the CGM to let her know when she should seek help. I'll be honest...I'm REALLY afraid of this one. If I were putting this list in any particular order, I'd probably slap this concern at the top.
4) TECHNOLOGY UPDATES!!! Sugar's current pump warranty expires in 1/11. Since she started pumping in 2007, I've tried to stay pretty current with pump technology. While writing this post, I revisited some websites to make sure my knowledge base was still current regarding the pump features I value most. The only pump I am interested in learning more about would be the tubeless Solo -- which was SUPPOSED to be here by now...but, instead, was acquired by Roche in 5/10 and is now going to begin with a limited release in the Netherlands sometime in 2011 (well, or so they say, anyway). So, that means the Solo is out as an option for us here, in the USA.
ANYway, I have full confidence that Animas is the right pump for Sugar and plan to renew with them for the next 4 years. Fine. Except...WHEN is the Animas/Dex combo pump going to be released? If you've been around D technology for any amount of time, you probably already know not to believe anything until you SEE it. (If you're a newbie...there ya go...BELIEVE IT WHEN YOU SEE IT!!!) New rumors seem to surface about technology all the time. It's not IMPOSSIBLE that Animas will release their new pump before 1/11...but it's HIGHLY unlikely. Getting new stuff approved through the FDA takes forEVer...and, now that the FDA wants MORE control, the whole waiting game is just getting longer.
SO....that loops me back to the first concern I mentioned with the insurance hoopla. If, indeed, they will only pay for ONE CGM, then.....do we want it now or later?
I guess that's it for now. There are some other things swirling around in my brain, but I'm going to bed. My brain is just going to have to rest whether it wants to or not....
Besides, the Great CGM Debate will still be here in the morning.
(Postscript -- Here's the review of our CGM Trial that followed.)
While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.