Friday, January 20, 2012

Continuing the mySentry dialog.

Thank you for your questions the other day! Today I'm going to post answers to the mySentry questions, Monday I will have a long beautiful post explaining ALL about the CGM and how it works!

I'm going to start by saying that Wed night we had to take off Ben's CGM. He was ice skating and bumped it pretty good. (In other words, he fell flat on his stomach a dozen times.) I made the call and pulled it...and TOTALLY regretted it the next morning. He went to bed with a BG of 132, he was 125 at 2:00am...and then woke up almost 400.

What the what?!!

Oh how I wished I was warned about this ahead of time. We didn't get that sugar down until almost lunch time as a result. OK...enough crying. I have the CGM on L now...onward!

Many asked about how far B could be from the receiver for us to still see the readings. Honestly, I had to do some detective work...and it looks like I didn't have a clear picture of what was going on before. (I blame it on the combination of my epic flu and my perpetually swelly brain.) Our house is newer, and only about 2000 square feet. It is a completely open floor plan, not a lot of walls. From what I could see, B could roam freely and the graphs would still show on the receiver. However, it turned out that every time he spent a minute or two near the outpost, it would send the updated data to the receiver. When he ventured to the other part of the house, the receiver would simply be searching for data. Our floor plan works in our favor, because the boys TV/Hang out room is on the other side of the wall from the outpost in his bedroom, and the bathroom is about 5 ft away. He spends a lot of time in that little triangle, and it seems that is why I was getting constant streams of information. Your house/your walls may vary. mySentry is made for nighttime monitoring, but it seems I get the added bonus of a little more wiggle room, and a little more fun.

Below are some points that answer some of the questions I received:

The receiver updates its data about every five minutes from the outpost/pump. That is why, when B ran to get some water, or a snack in the front of the house, there was no interruption in reception.

I didn't move the receiver at all. I kept it in my room. It was easily visible from my bedroom doorway. The outpost stayed put too.

The pump needs to be within 6 ft or so from the outpost, and the receiver needs to be within 50 ft of the outpost. I found it went a bit farther than that, but it depends on your walls/your house.

The mySentry works exclusively with the revel insulin pump by Medtronic. won't work with Animas pumps, OmniPods or Dexcom CGM's. :(

Medtronic has told me that a mySentry for multiple T1's is definitely on their radar. They can't talk about it...which believe it or not, is very encouraging. We have only one CGM that we share between the boys. We only put it on them when basals are off and I need an inside look at what is going on. Last summer we took a vacation to Disney, and no one has worn one since. I am expecting another CGM in the mail any day now, so we will have two in the house to take advantage of. The last year it has literally been, out of sight, out of mind...but it is back in the rotation again, and that makes me uber happy. They are so enlightening!

Originally I thought that one outpost/receiver was all I needed. Only one wears the CGM at a time...usually I have one boy with wonky numbers at a time, (although the stars have aligned against us on more than one occasion!) After working with the mySentry for a few days though...I came to the uncomfortable conclusion that complete peace of mind, for ME, will only come when I see three graphs in front of me. Don't get me wrong, the one I have is a dream, I don't take it for granted at all. And I'd rather see one boy, than no boys, that is for sure. I can't imagine how life changing it would be for a family with one type 1. The fates gave us three though. One day...

Regarding the high price of the mySentry system...Medtronic is actively doing what they can to ensure access to mySentry for as many people as possible, including seeking reimbursement. Thankfully, they do have a positive track record of gaining coverage for new types of diabetes technology (i.e. CGM) with the help of patients and healthcare providers advocating for these therapies. (For those interested in how to pursue coverage from their insurance company, there is a Reimbursement Tool Kit for download here:

They are also offering a 20 percent introductory discount, no-interest payment plans for as low as $50/month, and financial assistance for families who meet certain income requirements.

I'm sure the cost of developing, marketing and getting regulatory approval are nothing to sneeze at. It is the first of its kind. Obviously, this device isn't marketed to the millions of people that other devices are, so the cost is going to be higher than we hoped for. I'm sure that they would rather have it cheaper and more accessible for sure, but quality and quantity are huge factors. Will the price go down? I personally hope so, but I have no idea. I guess only time will tell. Medtronic will work with you though, call them or email with any questions, pricing or otherwise.

Some completely random facts about the mySentry:

It has a nightlight at its base that you can turn on. I'm assuming this is for PWD who would like to check sugars without turning on a light. 

The volume of the alarms can be adjusted, and so can the brightness of the screen. I have the screen very dim, but my husband is the kind of person that hates even the tiniest bit of light emanating from anything. (He often encourages me to turn my clock away from the bed.) I don't get it, when your eyes are closed you don't SEE the light! But to him, the mySentry is like having the international space station in our bedroom.

On the mySentry you can enter the users initials and choose a cartoon like picture to represent said individual. Why are all the pictures of hipster adults? I have children. From what I can see they are marketing it to families with T1 Children...where are the children pictures? The only blond guy in there has a beard, so that is who I have representing L right now.

My only complaint , other than the obvious multiple user conundrum, is that the mySentry doesn't show IOB. That isn't a deal breaker, but man, that would be oh so nice to see.

Did I answer all your questions? Let me know if I missed anything. Monday I will have a post with everything Medtronic CGM and answer all the questions pertaining to that. I'll be sure to include pictures, how it works, what it sends its data too, if my boys like wearing it, and everything in between!

My new blog construction is almost completed...whatcha think?


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