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Monday, February 7, 2011

CGM Advice Please!

Thanks for all the posts encouraging me to be bold and speak my mind with the endocrinology office. They got my email loud and clear!! They called me today and agreed to set up some one on one training with the diabetes educators to help move us along in our quest for more information, instead of making me pay for a $750 class that is all review material.  They also agreed to help us get started on the process of ordering a continuous glucose monitoring system.  My friend Emily (thanks girly!) is going to send us a Dexcom system to try, but before we order and pay for one of our own....I wanted to ask for tips.  What is your preference and why? The educator told me that the Dexcom is great because the site can remain on for 7 days but it is the only one that doesn't communicate with the pump. So, I'm wondering your thoughts. We aren't pumping yet, but plan to be within a year or so. We only need 1.0 units of insulin a day right now so the doc thinks the pump is silly until Parker needs doses 3-4 times a day. I agree. We are honeymooning so badly right now that Parker is having lows even after going 12 hours with no insulin injections and a full breakfast meal. I was also glad to see so many comments about your similar experiences with the honeymoon phase.

Bottom line, I am loving the advice and just want to see what the favorite CGM is among the DOC moms and dads. We are just beginning to research and we have to get more info on all the lines available but it would help to narrow down my search.

Also, please join me in praying for my T1 diabetic friend Jim, who just received a kidney and pancreas transplant. We have known this sweet family for a while now and we are so grateful he received a transplant so quickly. We just want to pray for peace for the donor family and that he will not reject these organs (amazing gifts from God).  Kris and Jim's Blog

7 comments:

  1. I've written a bunch of Dex posts on my site and there is a label for them on the side panel. Overall, the Dex isn't perfect, but it's so much more comforting to have it on. We got ours very soon after diagnosis, too -- I'm so happy to have it. The only thing I don't like is inserting it, because I don't like to see my son cry when he gets it on, and I'm always a little worried we're not putting it in right.
    By the way, I agree with you on the difficulties of Honeymooning. Esp. at night! A lot of checks! I've been seeing nighttime numbers not cascade down as quickly in the last week or so -- wonder if the pancreas is starting to slow down even more...Before, nights were driving me crazy, because he'd only last two hours before needing another snack.

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  2. I would say, given your situation, Dexcom would be the right CGM for you guys. We are on Medtonic (integrated CGM and pump) and we LOVE IT... BUT I know there are a lot of others that have not had our success with Medtronic. Since you are not going to be pumping right away, Dex is really a sure thing. =)

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  3. A couple of things here. And...please don't think I am nay-saying the MD...however, with such small amounts of insulin being used...a pump would be benificial...unless you are using diluted insulin. A pump allows you to work in 0.05unit increments (instead of 0.5unit increments)AND...the basal can be as little as 0.025u/h. The pump is AWESOME for young children b/c of the small dosing that they afford for. Just my two cents and I hope I didn't over step my bounds.

    On the CGM front...I am a Dex girl ALL.THE.WAY. We tried the Medtronic Guardian when Joe was 4 and really disliked it for many reasons. The site only lasted 3 days and got infected (I know, not necessarily the Guardians fault). It was rarely accurate. It had very specific paramenters on callibrating which was not feasible with a young child with oscillating blood sugars.

    I hope this helps...and good luck to you.

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  4. Thank you ladies! The advice is so helpful. I asked my doctor the very same question Reyna....I think because he does need the tiniest amount I can draw up in a syringe, that leave too much room for human error with air bubbles, misreading, etc. I want a pump soon, but we are only 1 1/2 months post-diagnosis, so they are slowing me down a bit.

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  5. We really like our Dexcom. We got ours about 3 months after Adam was diagnosed. Partially because one of my neighbors just happens to work for Dexcom....so I knew of the benefits early. It is definitely not perfect, and we have had our share of issues with it not reading correctly or having sensors fail, but now that we have it, I would not give it up!

    I actually think getting the CGM before pumping is great...it allows you to see what is going on in their body and helps you adjust a little better while on MDI. It also helped us because ADam got used to the Dexcom insertion, so that when we finally did start pumping, inserting the infusion sets was no big deal to him. Many use EMLA to help with the pain of insertion, but I have to say that while we did have tears the first few times, he got used to it quickly and it doesn't really bother him anymore.

    I don't have experience with the other pumps/CGMs, but I based the majority of our decisions on what the lovely ladies of the DOC recommended, and I have to say, they haven't steered us wrong!

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  6. We weren't ready for a pump until about 18 months post dx. There are definitely 2 distinct learning curves...plus the learning curve from a fresh dx...I'd say jump on the CGM bandwagon and worry about the pump later. It's been 5.5 years for us, and she just began Dexcom about 2 months ago. What I wouldn't have given to have had this information during our pump transition! I say go for Dexcom -- learn it inside and out -- then tackle the pump :)

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  7. We love DexCom - it's really the best choice right now. The only CGM that talks to the pump is the MiniMed/Guardian so unless you know you are going to go with that pump I would go with DexCom.

    My friend, Jen is documenting her trial with Dex tight now on her son, Addison.

    http://iamyourpancreas.blogspot.com/

    Joanne from I am Your Pancreas left this comment for Jen and it is pretty much exactly what I was going to tell her . . .

    My two cents on the dexcom:

    1. Watch the arrows instead of the numbers. The arrows give you the best information.

    2. When Elise rises or drop fast, the dexcom can't keep up. There will always be a lag time depending on how fast she's rising/dropping.

    3. Don't forget there's a 20% margin of error with the meters, so it's hard to tell how far apart or close together those numbers actually are.

    You're right about too much information... when we first started the information overload caused us to treat too fast instead of waiting and watching. Elise can go from single arrow down to flat in 10 minutes.

    We also tested WAY more than usual at first, but now we're testing much less than we used to. It's all a learning process, you'll get the hang of it.

    All of the comments for her are very helpful. check it out when you have time.

    Maybe we should plan a day to get the boys together next week. I know it's hectic for you but it would be great for you to see DexCom up and running on Nate. Ugly numbers and all.

    :)

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