THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, December 3, 2010

Our First CGM Story

In the Spring of 2008, this press release announced that Sugar's insulin pump at the time (Cozmo) had partnered with a continuous glucose monitoring system (Navigator).  During that same time, we were preparing to end Sugar's first year of pre-school after a rough start followed by a pretty rocky school year.

Once Fall arrived, Sugar began kindergarten at the same school.  She was unable to distinguish low blood sugars from anxiety and hunger, and spent a great deal of time going to the Health Office.  The nurse was very bothered by her frequent visits, and Sugar began feeling afraid when she felt she needed to go to the office for a blood sugar check.  She had low blood sugars in the 20's twice after trying to avoid a trip to the Health Office because she didn't want the nurse to get angry with her.  Then she had an episode of high blood sugar ("HI") that required an injection until someone could get to the school to change the site, and the nurse refused to administer the insulin, despite the fact that a parent confirmed it was the correct dose.  She was uncomfortable because she hadn't ever administered a dose that high before.  (Mind you, it was also the first time she needed to correct "HI" at school!!!)  Instead of administering the insulin she needed via injection, the nurse sat her at a table in the Health Office and had her eat an 80 (!!!!) carb lunch while waiting for a parent to arrive.

It was a mess!!!!!!

After that episode, I decided it was time to try a continuous glucose monitor (CGM).  The choice was obvious since Cozmo had established a partnership with the Navigator.  After a few months of insurance ramblings, and A LOT of patience, we received her Navigator in the Spring of 2009.

Now, keep in mind, that it was perfectly commonplace to hear about insurance fights and whatnot when trying to get a CGM covered.  Additionally, since it wasn't approved for use in a child, we had to argue that battle as well.  Our endocrinologist was on maternity leave and the doctor who saw us in her absence was adamant that he'd give us the order, but we could not - under any circumstance - call his staff for help with it.  They hadn't been trained and didn't have any precious time to spend trying to answer my questions.  There were no such thing as trials.  You either got it or you didn't.  Period.  Our insurance at the time agreed to pay for ONE CGM during the LIFETIME of our policy.

Suffice to say that GETTING the CGM took some time.  By the time it was actually in our possession, I had masterminded up a scenario of how wonderful it was going to be.  In my mind, she would be able to find immediate reassurance that her instinct to request a blood sugar check was correct...it would help me identify patterns of lows and highs to assist with adjusting her pump settings...we would **SLEEP** at night knowing that something was keeping tabs on her numbers and would alert us if there was trouble.

IT WAS GOING TO BE GLORIOUS!!!!

  

Not.

To make a long story short...The insertion was incredibly traumatic and complicated.  We had to cut the dressing in a special way for extra adhesive.  After the sensor was placed (which she screamed through every time, despite EMLA), we had to keep dabbing at a little window until it stopped bleeding.  It NEVER stayed on for more than 48 hours because the adhesive would fail, and we NEVER had readings consistent enough to trust.  There was a **TEN** hour start up window -- during which time, she was ideally not supposed to consume any carbs.  AFTER 10 hours, sometimes it would tell you start over with a new sensor.  You had to calibrate according to IT'S terms at predetermined time intervals.  For this reason, I had to make all sorts of special accommodations so I could go to the school and wait for it to demand a blood sugar --around the time I guessed it was going to feel like it.  I was going crazy doing everything I could to make it work.  We were blowing through test strips like candy trying to get it calibrated.  It was throwing information at me that I wasn't prepared to process.  She was incredibly frustrated with the entire mess.  She hated it.  She said it hurt.  She wanted to throw the whole thing in the trash!!!!  After about 4 weeks of insanity, our insurance company announced they would not refill the sensors...at that point, we had to decide if it was worth the fight.

And we decided it wasn't.  Even if we DID figure out how to use the stinkin' thing correctly (and get it to stay on!!!!), our insurance wasn't going to pay for the sensors.  What was the point?  With that, we threw in the towel, took it off, and it's been sitting in the closet ever since.

Our experience left a HORRIBLE taste in my mouth, and a FEAR inside Sugar's heart.  It's taken a long time to mumble the letters C-G-M without feeling anxious.

Through the DOC, I've learned more about CGM experiences. I've paid close attention to success stories.  I've hailed victory with parents who have had positive CGM adventures.  I've cheered over 3 and 6 hour windows with a nice fine line in range.

But I HAVE NOT been able to bring myself to try it again.

So, what's next?

11/30/10 Sporting her Talleygear Tummietote and trial Dexcom sensor
STAY TUNED!
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10 comments:

  1. NO FRICKIN' WAY!!!!! Wendy!!! I did not know you were trying it. YAY!

    I am so sorry about your first experience. It reminds me of Joe's first time trying a CGM. We tried the Guardian when he was four and it was a disaster similar to what you are describing.

    Through the D-OC I found the Dexcom, we love it. The important thing is to not get caught up in the numbers. I use it mostly for trending and heading off lows with all of Joe's antics with his excessive activity. I am not sure if it has really allowed me much more sleep than I was getting before. Actually, Dexter is what woke me up at 5am...BG=80...I am thankful he did. I slapped some glucose tabs in Joe's mouth and am now catching up with all my D Mamas while drinking coffee.

    I cannot wait to read how this goes for you and Sugar Wendy. Good Luck.

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  2. Hey!!! You are trialing Dexie!

    Thank you for sharing your first CGM story...that sounds just AWFUL. Poor Sugar. I can't wait to get our Dexcom in the mail....it should be here ToDaY!

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  3. Oy...brings back memories of my CGM experience! Which is why I'm not pushing for Lily to get one. Yet. Once she starts school though...

    I hope it all goes wonderfully this time around! So excited for you and your adorable girl!

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  4. Awesome! We love our Dexcom, especially lately since Elise has been crashing after dinner. It has caught what would have been some nasty lows so many times. Like Reyna said, we mostly pay attention to what the arrows are doing.

    Good luck and I hope you and Sugar love it jsut as much as we do!

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  5. So glad you are doing the trial. And I was so happy to hear that Dex caught a low for you at the park the other day!

    Hope you love it like we do. :-)

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  6. I both love and hate our Dex. Bryce has very little fat so Dexcom thinks the sensor hits muscle or something and bends causing us to get wonky readings...20-30pts fine but we get closer to 100pts off, missing many lows. Although sometimes it is spot on...the lack of consistency drives me nuts. And I am not using it for the numbers but arrows and trends and even then, I prefer it in the closet.
    Hope you have one of the 'good' experiences with it.

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  7. I Love Dexter. I know there are times where the numbers aren't right, but the arrow trends HAVE NEVER LET ME DOWN. Quite frankly, I could care less about the numbers themselves. The sensors can last up to 2 weeks! That's nice. I use skin tac with mine and they hold through bathing for about ten days before needing a little extra tape! Hope this experience is better for you!! :)

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  8. We have a minimed pump and LOVE LOVE LOVE did I say love, our CGM. I can't image D without it. We are able to catch highs/lows before they are problems! I love it!! I feel without it I am driving blind. :)

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  9. OH MY LORD! Is that a Dexie I see???? I love Dex. She's not perfect... but God Bless her. I'd cry HUGE TEARS and HIDE UNDER THE COVERS if she left me now. Seriously. The peace I have with her is incredible. Just today she altered me that although I had tested Sweets and she was 79 - and I was treating it - she had dropped over 20 points - down to the low 50's in less than 5 minutes. At school. It could have been ugly. But Dex was on duty. I so hope you love her like we do!

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  10. Good luck. I hope you find it useful. I've been researching Dex for a while. I'm in the UK and on a Minimed pump but I just can't bring myself to use the Minimed CGM. The sensors are brutal! I tried the Navigator and wasn't impressed with the calibration either. So I'm considering Dex, even though I'll have to pay out of pocket.

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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.