Best of Betes Blogs From 2014
Best of Betes is from Sara Nicastro and it is wonderful!
from Best of Betes Blog: Best 2014
"It’s that time of year again – we’re wrapping up the Best of the ‘Betes Blogs of 2014. I’ve visited the posts for all of this year’s hosts and compiled their lists of the best posts for this year. It was really interesting to look back at all the posts that have been written over this past year and see all the changes we have experienced.
[If I told you it actually took me HOURS to look up all the posts and write the code for all the links in all the categories, would that make you more likely to vote? Please vote!]
From now until 12:59:59 PM PST on December 31, 2014 visit the links below (all links open in a new window so you won’t lose your place!) to select your favorite posts from 2014. Then after the first of the year, we can see the Best of the ‘Betes Blogs of 2014 as we begin sharing about our meet-ups, d-mistakes, vlogs, advocacy, humor, and all the other best moments of the diabetes community in 2015."
If you want to read some of the best diabetes blog posts from 2014, this is the link for you. While you're there you can even vote for one in each category and help to decide the winners for 2014. No prizes go with the distinction... just a bit of bragging rights.
Psst... I won way back in March for a post by a Type Awesome (That's a D parent) for my blog titled 'Pitstop Fail' -- just saying ;)
But seriously, there is a ton of great writing and advocacy at this link, you'll be happy that you took the time to check them out here
Don't Let Doctors Push a Pump on You
I've never told the story of the day that we chose Arden's insulin pump because it involves people that I love and who have done countless wonderful things for my family... f%&cing up.
But it's been a while and most of the people involved in the story have moved on to other places of employment... so what the hell.
Kelly, Arden and I stepped into the conference room at our children's hospital for a pump presentation. There was maybe a dozen families in attendance, each frightened, unsure and hoping for proper guidance. The people running the presentation spoke for a while, they taught us about pumping and then brought all of the different pumps out so that we could see them. Parents began to formulate questions, it was obvious to me by the trainers answers that they had their favorite pumps and were trying to lead people to certain devices.
Not wanting to be part of the folly, I went back to the demo pumps at the now abandoned display. This table was set up so specifically, like a display at a high-end retailer. Each pump was presented just so, documentation arranged off to their sides. It looked like the manufacturers sent a trainer, to train the pump trainers on how to make the pumps appealing.
Beyond the table was in a misshapen corner of the room where the trainers had abandoned the packing materials. The mess caught my eye and when it did, I noticed a little white box with green and blue printing that didn't look like it belonged with the garbage. I walked over to investigate and found an Omnipod starter kit that contained a PDM and sample pods.
"What's this", I asked a trainer.
"You don't want that", she replied.
Not being the kind of person that enjoys being told what I do or don't want, I responded with a bit of sarcasm, "Oh... why not?".
Then it happened, a person I was counting on to give me good advice, began just to say what ever they could think of to make me rejoin the group.
"Your daughter is small, you want a Ping" - "This one won't work on skinny kids" - "It doesn't have a small enough basal rate" - "You will be limited to sites" and my favorite, the scare tactic that they all love to pull out... "If you don't like it, you will be STUCK with it for four years because of (Cue scary music) your insurance... FOUR YEARS".
I didn't listen to her. I inspected the Omnipod and saw a lot that I liked. I saw different, innovative, the ability to change designs without having to repurchase and of course, I didn't see any tubing. We were sold and set off to show the pod to Arden so we could explain how it would work. In the time that we sat there talking to Arden, each trainer took a shot at scaring us into not choosing the Omnipod.
Fast-forward to two years later
Arden's Endo appointment ended and the NP asked if Arden could wait outside, she closed the door behind Arden and then said this.
"I wanted to take a moment to apologize to you..."
You see, two years prior at the pump training that I just told you about, the people in Arden's practice didn't have any experience with the Omnipod and they didn't want to be responsible for overseeing a device that they didn't understand. It wasn't the basal rate or a lack of sites that made each of them try to talk us out of what has become the foundation for how we keep our daughter happy and healthy. They weren't concerned medically and everything they said was one hundred percent horse shit. They were just covering their asses. Anyway, the NP goes on to tell me that because of the fantastic success that Arden is having with the Omnipod, the institution is going to start prescribing them to children.
There are a few professions that we are conditioned from birth to revere. Police officers, teachers and doctors are the big three. You listen to police, you respect your teachers and you assume that your doctor knows much better than you - and I would tell you that I believe those things are true a lot of the time, but not all of the time.
I tell you this story today because I recently heard about a family that was being forced away from a device that they wanted by their doctors. Medical professionals who defended their position with a lot "information" and "reasons". Doctors who took advantage of the patients desire to want to believe and listen to them – I deplore that. I've been around type I diabetes long enough to see this happen time and again and I wanted to offer you the moral support to trust yourself. I'm certainly not suggesting that all doctors are lying, or that every time you are prescribed something it's with deference to who the institution has business relationships with - but you know, it's worth considering.
You are the final word on what pump (or CGM) is right for your family. Do the research, ask the question and by all means take your medical teams advice seriously, but don't let anyone pressure you into a decision that you aren't comfortable with.
Stand firm the next time you feel pressured by your medical team to make a decision that you don't agree with but for all that is sacred, if a cop tells you to put your hands up.... please do it. ;)
If you're looking for a deeper conversation on this topic go to episode 124 of the Juicebox Podcast.
Whack a Nurse
It happens every time that we change Arden's CGM. Not some of the time or once in a while, not now and again - EVERY fu*$ing time.
"Arden we need to swap your Dexcom sensor"
A moment later Arden and I meet up, usually at the kitchen island, she hops up to bring her hip to my eye level, all is well – until I reach out to remove the sensor.
Arden instantly tenses up, becomes frightened and speaks the following words - EVERY time.
She always begins with an apology for being anxious, "I'm sorry - I'm just afraid that the wire will come out".
That's it, she worries that the wire will break free of the sensor and stay embedded in her skin, she further believes with all of her heart that this will lead her to a hospital visit where the wire will be surgically removed.
Do you know why she thinks this... let me tell you.
Because of one poorly thought out moment that happened in 2010 when a nurse told Arden this could perhaps happen and that she should be very careful. "I've heard that the wire can break off and you'll have to come to the hospital to have it removed" - The person who said that was an idiot, not for saying it, but for saying it in front of Arden.
By the way, the wire has never broken off. I actually believe that Arden has as much chance of seeing the Loch Ness Monster as she does of needing surgery to remove a CGM wire, but thanks to dopey the nurse... she just can't shake those five year old words. It's now fIve years and probably hundreds of CGM swaps later and Arden still has this reaction EVERY time. One poorly considered utterance to a six year old and nothing I have yet to say has helped Arden to relax enough to forget those words.
I've tried to reason with her - "Arden we do this all of the time, has the wire ever come out?"
I've tried joking, reassuring, hugging. I've tried everything that a reasonable parent could think of and nothing ever works. By the way, Arden doesn't think the CGM hurts, she loves wearing it and receiving the data. Never-the-less she experiences a moment of real terror each time that we swap her site. Breaks my heart, frustrates my mind and dings my soul...
Last night I tried something different in the hopes of alleviating her needless anguish. I cursed.
"I'm sorry - I'm just afraid that the wire will come out..."
"Arden, I wish the god damn nurse who told you that the wire could break was here right now. I would smack her in the head!", I began. Then I continued telling Arden how angry I was at the nurse for saying something like that in front of her when she was too young to understand the intricacy of her words.
Here's to hoping that the next swap is different and that some well-meaning, yet ultimately mis-guided person won't say something else that terrifies my kid.
I think that I really would whack her in the head if she was here.
Dexcom's New 505 Software Review and How To
The (Algo) Rhythm is Gonna Get You!
Last week the good folks at the FDA approved Dexcom's latest software for use in your G4 continues glucose monitor. Let's talk about what you'll need to know about installing the software on your receiver and if I saw a difference after upgrading.
What you need to upgrade?
A Dexcom G4 adult receiver (The company has announced that they will submit the software to the FDA in 2014 for approval in their pediatric receiver).
A Windows computer with Internet access
The charging cable from your Dex, minus the electric adapter, so USB to Dexcom
A few minutes
What to do...
Go to Dexcom's website and click on the "Download NEW Software 505" link. You will need to login to the Dexcom site, if you do not have an online account on their site, you can quickly make one.
A downloader program is installed on your computer. After launch it will ask for you to connect your receiver to the computer and the rest happens in short order. Please note TWO important things. The process will revert your receiver back to it's factory specs. Make notes of all your settings and be prepared to reconfigure the receiver (takes a few minutes) after installation. Also, you will have to restart your sensor session after the update, so you won't be getting any of that good BG data during those two hours - plan accordingly.
You don't have to wait until it's time to put on a new sensor to upgrade! Just choose 'Stop Sensor' on your receiver's menu and then restart the receiver after the software upgrade has finished. You DO NOT have to change your sensor site to do a sensor stop/start.
Should I do it?
Yes, here's why...
Dexcom is reporting that the MARD (mean absolute relative difference) will increase by 4%. In plain language, your Platinum G4 without the new algorithm has a 13% MARD , the new software clocks in at 9% MARD - a lower MARD is more accurate.
Did you know? The new 505 software is the version currently being used in artificial pancreas trials!
What did I see after the upgrade?
We upgraded Arden's receiver and have been running it for a week in conjunction with another G4 receiver that is using the previous software. My in a nutshell review -- the new software has been consistently closer to our finger stick checks than the previous software. We use the OmniPod meter with Freestyle strips. This is not to say that the previous software is always farther off then that of the newer version - at times it has been and at times it hasn't. The newer version (505) has been consistent with my prior expectations or better, never worse. But when it is appreciably better, it is 20 - 30 points more accurate and that's worth upgrading for in my opinion. It also seems to deliver more accurate fall and rise rates that don't linger after the change in BG has leveled.
Here's some side-by-side pics...
The first four images show a BG rise (I confirmed with a meter not pictured). You can see that the previous software lagged behind the rise and never reached the actual BG which topped out at 213 (on meter). The fifth image is an example of no significant difference between 505, previous and meter. The last image shows a metered 68 that registered as a 6o with the new software but an alarming 46 with the previous version. After testing and calibration the previous version adjusted to 60, the new version adjusted to 66.
Conclusion...
Obviously my observations are just that, observations. Nothing very scientific was done and I am not a doctor as my disclaimer mentions. The upgrade is fast and simple but Mac users will have to bum a Windows machine from a friend.
The 505 software is currently not approved for the pediatric version of the G4 but Dexcom announced that they will be applying with the FDA in the last quarter of 2014 - that's any day.
The upgrade is free, better and the next step toward CGM data that perhaps one day you'll be able to dose insulin from - might as well do it... I don't see any downside.
Managing type 1 Diabetes just got a little bit easier in my opinion and I expect to see a difference in Arden's A1c after a full three months with the new software - time will tell.
First Impressions: Dexcom SHARE
I'm a bit of a pragmatist so when asked the question, "What would make the Dexcom continuous glucose monitor better?" - my simple answer was that I would like it to be able to send information to a remote location. I don't need it to power Iron Man or transform into a hover board. I just need to not have to get out of my bed and walk into Arden's room when it alerts. After eight years with type I diabetes, that is what I need more than anything else – pragmatically speaking.
It's my assumption that future iterations of CGM devices will do more. I'm hopeful that sooner rather than later, the device will be able to broadcast it's signal without the aid of a cell phone so we will be able to receive alerts on our phones or our futuristic cerebral implants without having to attach the Dex to a transmitter. But really, once cerebral implants are a reality, whose going to need a cell phone?
Back here in reality
For the moment the technology that exists has limits. First the signal from the Dexcom transmitter has to be sent to a device that can read it. The current transmitter, per the Dexcom website, has a useful distance of 20 feet.
After the transmitter sends the signal it must be captured and translated into data you can use. That's where the receiver comes in and now with the advent of SHARE, your iPhone can act as a secondary receiver.
But how does the signal get from the transmitter to your iPhone?
When Arden goes to bed she places her Dexcom receiver into the new SHARE cradle. The cradle takes the data that the receiver has gotten from the transmitter and sends it, via Bluetooth, to Arden's iPhone running the Dexcom SHARE app. That iPhone, using it's cell or a WiFi signal, sends that information to Dexcom's cloud. My iPhone running the Dexcom FOLLOW app, gets Arden's data, alarms and graphs from the cloud. It sounds convoluted I know, but it is actually very simple to set up (minutes), seamless in its execution and just plain works. In my opinion, that's when technology is helping you, when it's easy and reliable.
setup
To complete the cradle setup, plug it into the wall and pair it to your Dexcom receiver. You are finished.
To set up the transmitting iPhone (the one that needs to stay within Bluetooth distance of the cradle) download the Dexcom SHARE app from the iTunes app store.
Setting up the iPhone that you will view the data requires the Dexcom FOLLOW app.
Follow the onscreen directions to set up both apps. I've captured the SHARE and FOLLOW setup screens so you can get a look at them.
SHARE app
FOLLOW app
Using the SHARE
I use the SHARE in a few ways but mostly for sleeping hours. In my mind the device is perfect because I don't want or need it to be everywhere that Arden is. I believe that much of Arden's growth and the process of her maturing in a way that allows her to care for herself during most hours of the day, are a direct result of the situations and problem solving that is created by my not being able to constantly see her BG.
Despite what you may imagine, safety is not my first concern when I think about overnight hours and type I diabetes. Safety is important but much of the A1c success that we have is a direct result of managing overnight BGs (texting from school is a close second). These sleeping hours are free from eating and often very manageable. I monitor and manage Arden's BGs at night more with her long-term health in mind than short-term. Still, getting out of bed over and over is exhausting and why I have longed for the SHARE to come to market.
SHARE has also stopped me from having to run back and forth to Arden's room in the evenings while Kelly and I are hanging out in the living room. Big plus!
I was able to run to the store the other day in a moment that I normally wouldn't have. Arden's BG was good, stable but on the low side. I left the house confident because I could see her data. The FOLLOW app works perfectly with my cell signal.
The FOLLOW app has customizable and rather loud alarms that are difficult to ignore. They have so far woken me at night with no trouble.
Would I pay $300 for the SHARE?
In my mind, if you have the money... it's worth it just for overnights and the occasional sleepover.
Check this out!
I know that many of you want to use this technology differently than I do and so I experimented with making the cradle portable (read: without an AC outlet).
I used a portable cell phone charger that I bought on Amazon and the results were very encouraging. The cradle ran constantly, powered only by the battery source for 17 hours and 40 minutes.
If you wanted to make SHARE portable, put it in a dugout, under the bench at a basketball game, etc... you easily could but remember that you would be limited by the 20 foot restriction of the Dex transmitter.
All the rest...
- I was given this SHARE by Dexcom as a gift. You can read my disclosure of how that happened on the SHARE unboxing post
- The cradle isn't sexy but it's solidly built and will sit stably on a table top
- The Dex receiver's mini connector looks to be protected from wear and tear by the specific and tight way that the receiver is slid into the cradle
- iPhone and iPod only, "currently not available for Android"
- Cost is listed as $299 on Dexcom's site, it is not covered by insurance
- No prescription is required
- For sale in the US only
- Dexcom suggests a different cradle for each person in your home that needs the product. I'm trying to find out why from the company in more detail than their site indicates.
Tidbits directly from Dexcom
Development work is happening now for "Android, iPad and other iOS devices"
The Bluetooth low energy required for SHARE was not available on Android when the system was being developed - Dexcom is "actively working on it"