THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Saturday, December 4, 2010

The Great CGM Debate

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.

Goodnight...

(Postscript -- Here's the review of our CGM Trial that followed.)
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10 comments:

  1. 1. The problem with insurance companies covering CGMs has something to do with how inaccurate they are/were, if I understand the issue right. They've gotten a bit more accurate, so maybe insurance won't be so stingy?

    2. Can't help you there.

    3. Here's the thing with CGMs and lows. There's about a 15 minute delay between when you feel the low and when the CGM alerts. So, this may actually be a good thing for Sugar when she's not sure if she is low. She'll still feel them, but the CGM will confirm it for her.

    Hope that helps!

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  2. Wendy, I don't know what to tell you about the insurance, I was so lucky and didn't have a struggle with my insurance at all over the CGM, but my insurance did tell me that I could only have 1 visit with the dietician in the lifetime of our policy (wtf?) and all I had to do to fix was go through their appeal process. It wasn't easy, and took a long time, but ultimately it was resolved. I am sure if the 1 cgm thing happens with this insurance, you could appeal it.

    Since sugar is so little and hasn't developed all the "fatty" spots that tend to happen after puberty, your kinda outta luck on the real estate front. Do you use her arms for infusion sets? If she is not clumsy, you could try putting the sensor on her arm.

    As far as relying on the CGM, it happens to all of us that use it. The most important thing you can remind her over and over, is that she still needs to do a real fingerstick test before eating, playing, sleeping or anytime she feels weird.

    I am so with you about the Solo, I get an upgrade this year too, and wanted the Solo! The CGM thing is what is holding me back from dumping medtronic and switching pumps. My A1c is so much better with the CGM, that its not worth it for me to switch. But I am sure Animas has an upgrade policy where if something new comes out while your pump is still under warranty, you can get the new technology at a discounted rate.

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  3. Hi, Wendy,

    Our daughter Ellery is four years old and has been on the Dexcom 7 Plus for about a year. At this point, I can confidently say that, as imperfect as this technology can be, I never want to be without it.

    Regarding #3, hypo awareness. I agree with Cindy. Our experience has been that Ellery feels weird then checks her Dex, so the Dex then confirms her feeling. Since Ellery is so young, this has also served almost like a bio-feedback device, helping Ellery identify what highs and lows feel like.

    Regarding your 'anyway' (timing of the Animas/Dex combo)... Last I heard (from someone who trains for both Animas and Dexcom), the combination will be prescribed as a pump rather than separately. So, if your insurance only allows one CGM for the life of the policy, this shouldn't be an issue, as you wouldn't be getting a new CGM, you'd be getting a pump (that comes with a CGM). Of course, pumps have their own insurance timing issues!

    --Katherine

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  4. It is not perfect by any means...and there are times that we take a "break" from the CGM. I do love the trending...and not always having to "check" Joe when I am tempted to give him a boost of sugar before he goes to play outside etc. It has cut down on our checks a little...but, as Mrs. Harer stated you would always check a blood sugar prior to administering insulin, eating, etc...

    About your concerns...

    1) The insurance has not been a problem here. As a matter of fact the CGM and ALL the sensors have been covered at a 100%. The one sensor for Joe's lifetime...I haven't read that anywhere with our current insurance. Katherine brought up a good point with the "combo" pump/CGM that will, eventually, make it to the market.

    2) We only use Joe's arms for the CGM. He has NO fat on his ABD...and the only real estate he has for his pump is on his butt. THank goodness he is built like his Mama in this dept...or we would be in a world of hurt.

    3) I so "get" this one. Unfortunately, Joe is so engrossed in being a kid, in his sports, in life...that he has not been very reliable in catching his lows. The Dexcom has helped us catch many lows before they have occurred AND Dexter has made athletics more easily manageable.
    I think the Dexcom only has a 5 minute lag time.
    4) Animas has usually rocked-it with their upgrade policy. I am hanging onto this Ping as long as I can and then hoping to upgrade once the "combo" is available. I do want to check out the Omnipod and Medtronic once again...but am almost 100% sure we would stick with Animas.

    You are amazing. I love that you are taking this journey with everyone. I also appreciate your very legitimate concerns. I cannot wait to hear how you and Sugar rate your experience.

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  5. Animas does have an upgrade policy so if the integrated pump/cgm comes out, it isn't much to upgrade to it.
    As for insurance, most companies are now covering cgms which they weren't doing even a year ago. You should be able to get that info before you decide. Ours covered 90% for the dexcom and sensors.
    Good luck deciding.

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  6. We love Dex. I must say this up front. Our issues are different from yours... For us, Sweetpea does not EVER recognize lows so it's vital in that regard. And that makes the real estate thing something that we're willing to deal with. You know... she's tiny. NO abdomen room. No leg room. It's only tush and arms. SHE decided she wanted her pump on her arm and Dex on her tush. So that's what we're doing. We had BOTH on her tush (her size 3t tush) and it worked fine for 7 months. The problems we had were NOT because of scar tissue.

    Insurance - they paid 90%. We pay for sensors. $83 for 3 months (10%). We made it in literally DAYS before the FDA changed their policy on use for children. We had NO PROBLEM getting it approved. Dexcom was awesome in their help. They contacted our endo, they told us specifically what they needed, no insurance hassle at all - unlike the pump. However, our endo has told us that they are no longer allowed to prescribe the Dex for children. Have you talked to your endo about this?

    As with anything, it's pros vs cons. For us, the pros far outweigh the cons. We need it and we need it NOW. That may not be the case with you. I know that you will do what is best for Sugar and YOUR family.

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  7. Hallie we were just told the same thing about the Dexcom, so we went with minimed's CGM and I am happy so far. It's not been long though so I have no in depth knowledge. However, it is wonderful to only have one thing to carry around. I asked about the whole issue of "real estate" for Isaac too as the only two places he can have sites are his legs and his bum. The trainer said that the CGM's actually had less trouble with scar tissue than with infusion sites being as how the actual trouble with infusion sites isn't just scar tissue but more so the insulin causing a build up of fatty tissue. So, she said that it wasn't a big issue as long as we were rotating between places regularly and this topic was one that she's discussed with Dermatologist at length.
    So, far for us the priceless moment is at bedtime when we check him we can see if the number is going up, down or maintaining...this really helps us to rest easier or adjust before any real issues come up. Not perfectly though as we're definitely still learning.

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  8. First off..WHAT IS GOING OVER THERE?!! I had no idea you were going to trial the CGM ! I cannot believe it! We will be joining you in a trial come January. I have many of the same concerns as you. I also keep wondering if I should just wait until the technology gets a little better and a little smaller...Is it worth it to have this extra device. I know most everyone here speaks volumes of praise for the CGM but I find it hard to believe I would love it more than the pump. Can't wait to hear your official review....

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  9. I am so happy to be in the 'I-have-no-idea-it-is-too-early' boat of D. When it is our time to sort through this madness all I will have to do is visit my beautiful D-Moms and they will have it all worked out for me!!!! ;)

    Agh. Seriously. You amaze me.

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  10. By the way...

    We've found that the biggest factor for getting accurate readings is finding a good location for the sensor. The best site seems to vary for each person. For us, ensuring that there is no pressure on it while sleeping has been key.

    The next major factor for us has been ensuring that the sensor doesn't get prematurely loose. To get maximum sensor duration, we wipe the skin with alcohol then paint the edges of the sensor tape with Skin-Tac and let both skin and sensor tape dry before insertion.

    Also, in case you're interested, there is a good discussion forum for CGM users via Yahoo Groups:
    http://health.groups.yahoo.com/group/diabetescgms/


    Good luck!

    --Katherine

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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.