G6

The Dexcom G6 is up and running, and it's keeping us running.

Technologically we're totally impressed. It's accurate. The readings flow seamlessly from the transmitter to my daughter's iPhone and the Dexcom receiver, and then on to my phone and the Dexcom Clarity page online. And no fingersticks? Amazing.

We used our previous CGM, the G4, only as a general guide. Heading up or down? Always alarms between 2-3 a.m.? Should she do anything before changing for gym? It was less accurate and had crapped out months ago on sharing numbers to anybody's phone, so unless it was alarming with an urgent low, it was mostly background noise to be addressed eventually.

The G6 feels less like a lowly assistant making suggestions from the corner of the conference room and more like the boss. What it says goes. Low predicted in 15 minutes? Eat something. Now! Suddenly skyrocketing? Drop your pants and check that site! Clarity shows you've gone over 220 after lunch five of the past seven days? Fix something!

Some of that is good for us. Most of us get lazy with diabetes at one time or another, and of late, we have. Having the G6 looking over our shoulders and nudging us at every turn is causing more action than had been happening here, at least in terms of more minor excursions from a target blood sugar range.

Some of it, though, is wearing. Already. After 12 days. (But who's counting?)

The alarms are driving us nuts. Starting it up over a busy school play weekend followed by a Thanksgiving week full of family and food certainly didn't help. Diner pancakes at 10 p.m., daily servings of stuffing, and pecan pie two nights in a row are rare treats, and as the schedule goes back to normal, alarms are settling down. We learned quickly not to have both the Dexcom receiver, and all of our phones set to alarm when all of them are in the same house. The cacophony and the subsequent process of silencing them all would jar anybody's nerves.

We're also struggling with information overload. The numbers are in our faces all the time. Because the previous system's data went only to its own receiver, my daughter would look at it at mealtime, before bed, and when it alarmed. Now can see numbers whenever she opens her phone. And with share operational again, I too can see numbers anytime I want instead of looking at the receiver once a day- or less. A diabetes-life balance is, in my opinion, a very important aspect of living sanely. It will take some time to figure out how to compartmentalize the extra information so that it does not overwhelm.

Was it worth waiting for? Absolutely. The steady stream of accurate data is incredibly useful. It helps with hour to hour decision-making. Once the bulk of the data isn't skewed by Thanksgiving food, the long-term graphs will be incredibly valuable in adjusting basal rates and bolus ratios. And maybe when the data settles down into a more predictable range we won't mind seeing it so often.

What We Know

My daughter got a new pump a couple of weeks ago. It's her fourth Animas pump.

We know there are other options out there. The new Medtronic pump with it's built-in glucose-responsive CGM technology is by far the closest to the ultimate goal of a closed-loop system. The slim and durable Tandem has some nice user-friendly touchscreen and Bluetooth features. The tubeless Omnipod would be convenient with exercise clothes and on the beach.

We briefly considered all of the options.

In the end we decided not to undertake the challenge of learning to use a whole new insulin delivery system. We decided to stick with what we know.

 

My daughter has been attached to an Animas pump since fall 2004, 24 hours a day, seven days a week. It's as close to a part of her body as an electronic device can be. Replacing it with a new brand of pump would, we think, require an extraordinary amount of learning, thinking and adjustment. Which seems unnecessary since we're perfectly happy with the results we've had.

 

We use several of Animas' unique features to our advantage. My kid has very low basal rates during certain parts of the day, so the tiny basal adjustment increments the pump offers are great for really fine-tuning her doses. The meter remote is a huge quality-of-life feature because it allows my daughter to program a bolus without extracting her pump from underneath a dress or a marching band uniform.  We have a good feel for the current insulin-on-board set-up, and for how the bolus calculator takes her blood sugar into account so that we can easily factor that knowledge into dosing decisions. We've rarely had problems with our pumps but when we have, we've consistently had good experiences with Animas' customer service department. After 12 years of the same pump I'm able to do site changes, battery swaps, and cartridge changes under almost any circumstances. My kid can program a bolus and have a conversation or keep an eye on the baseball game at the same time. Using this pump has become second nature.

 

In four years, or maybe sooner, our decision making process may be different. There could be some amazing new technology on the market by then, like an honest-to-goodness artificial pancreas or at least something much, much closer than the current options. For that we would certainly switch brands and learn something completely new. Until then we'll stick with what we know.

New and Sparkly

We fired up my daughter's new insulin pump over the weekend.

Our four year warranty was up and, while the pump still worked, its appearance led us to believe it might be living on borrowed time:

The screen protector was peeling off.

And so was the paint.

It was still effectively giving insulin, but the idea of having no warranty was making us nervous.










We've had very few issues with Animas pumps over the past 12 years, but when we have, having one under warranty has unfailingly led to an overnight replacement.

That's hugely reassuring, especially considering how long it took to order a new one from scratch.






Granted this wasn't an emergency since my daughter's pump was still perfectly operational, but it took about six weeks between my first call to inquire about a replacement and its arrival on our doorstep. The process began with two different phone calls with questions for me, then doctor's orders, insurance authorization (which was the longest process), another phone call to discuss our copayment and the shipping details, and then actually getting it shipped out.

The possibility of reverting to multiple daily injections for even a fraction of that time is not appealing to us.

The new pump is silver, and sparkly all over, with no chipped paint. The screen protector is intact and clean.

And we expect to have a reliable source of insulin delivery for four more years.

 

 

Like a G6?

We upgraded our Dexcom system a few weeks ago to the G4 Share.  Why, you may wonder, didn't we go straight to the newest Dexcom system, the G5?  And what's the difference, anyway? 

Here's what we learned about the distinctions between the two:

-The G4 Share sends data from the transmitter (worn on my daughter's body) to a receiver (within several feet of the transmitter). The receiver has a screen on which the data is viewable, and it alarms for high and low blood sugars.  The receiver then sends data to a paired smartphone (in this case my daughter's). That phone, in turn, can be set to send data to other smartphones (in this case, mine and my husband's).

-The G5 Share sends the data straight from the transmitter to a smartphone, bypassing the need for a receiver.  There is an option to have the data go to a receiver instead, but it cannot go to both places.  From what I've read,the distance over which the G5's transmitter will send its data is shorter than that of the G4's transmitter.  The share part works the same way, with the option to send data on from the primary smartphone to designated recipients.

Here's how we thought through our decision:

-My first consideration was that I didn't want my daughter's phone in her room at night.  The temptation to text, stream Netflix and/or scroll through Instagram would be entirely too great. Because of it's reportedly shorter transmission range, I wasn't confident that the G5 transmitter's signal would reach through the wall to the adjoining bathroom or hallway. And even if it did, I had another issue:

-I didn't want my phone in my bedroom at night. Much to the chagrin of a few of my friends, I'm known for putting my phone 'to bed' by 9:30 p.m.  If I were using it for Dexcom alerts I would not only need to leave it next to the bed, but also leave the sound on.  This wasn't appealing if we could continue our current practice of using a receiver with a longer signal instead.

-We then began to consider where else my daughter wouldn't or shouldn't have her phone, even if it were part of a medical device. It would be hard to carry a phone during gym class.  What about marching band practices and competitions?  Theater costumes don't often have roomy pockets.  The size and simplicity of slipping a much smaller-than-an-iPhone Dexcom receiver in a pocket or clipping its case on a waistband seemed much more convenient in these situations than finding somewhere on her person to stash the phone.

-The receiver emits a unique series of vibrations and/or beeps to alert its user of low or high blood sugars.  This would make it possible to be alerted of, and to address, a problem even if the receiver were silenced and tucked deep and irretrievably in a uniform or costume.  Two vibrations for high, three for low, four for very low.

-The receiver's information seemed more quickly accessible.  The receiver is usually clipped to her waist band or in her front pants pocket. At the push of one button to wake up the screen, she can see her current number, a trend arrow, and a three hour graph.   With the phone, there would be the process of locating it in her bag, unlocking it, opening the app and then being able to see the data before putting the phone away again.  More steps would make it harder to be surreptitious and more likely to get questioned or looked down upon for using her phone inappropriately.  Was it worth the extra conversations and dirty looks?

It was a tough decision, mostly since my inclination is usually to go with the very newest technology, but I'm convinced we've made the right choice for our family at this moment.  Now we can stop thinking about it until we have to decide whether we'd like a G6 or a G6.

Bits and Pieces - Catching Up Before Looking Ahead

May is upon us, and the pace is picking up again.  In case you missed them, here are a few interesting bits and pieces of the big world of Diabetes which have crossed my computer screen in the past week or two:

This NPR podcast entitled, 'The Robot Vacuum Ate My Pancreas,' tells the story of Dana Lewis who invented her own artificial pancreas.  Not only is it fascinating to hear that (extremely intelligent, technologically trained) people are successfully doing this, but the piece does an excellent job of explaining her motivation.  A comparison of maintaining level blood sugars to trying to keep a car going exactly 70 miles an hour without cruise control was one clever example of how this piece describes the kinds of frustrations diabetes management brings.

The new Miss New Hampshire has Type 1 Diabetes and hopes use her platform to raise awareness throughout her state and during the Miss America Competition.  Awareness raising is always good in my book.

There was a huge stem cell therapy conference at the Vatican last week which received press in the mainstream media.  The attendees were addressed by both the Pope and Vice President Biden, along with many others. Diabetes and its community of advocates were well represented along with a multitude of other issues stem cell therapy may eventually provide help for.  The conference was designed to encourage collaboration between scientists using similar technology to treat different diseases.  You can sample the conference and its media coverage via the twitter feed.

Diabetes Blog Week is coming!  The week runs from May 16-20th with wildcard topics for those who want to keep going into the weekend.  I'm excited to respond to the prompts, and to read the thoughtful posts they're likely to evoke. 

National Nurse's Day is this Friday, May 6th.  Our school nurse will get a bottle of Bath and Body Works' Stress Relief Hand Sanitizer, and a card from us.  Don't forget the nurses who are important to you!

In my daughter's little world this month will bring big events like the annual standardized tests, at least 4 birthday celebrations, the 8th grade semi-formal dance and an all day music field trip which includes both performance competitions and time at an amusement park.  These should all prove to be incredibly exciting.  Will diabetes cooperate?  Stay tuned for details!

You Don't Know What You've Got 'Til It's Gone

At first it was kind of a novelty to live like we did in the olden days.

The element of surprise added interest to every finger stick.

The highs and lows made us think a little harder about the why's and the what next-s.

The nightly 2 a.m. finger sticks let us relive the old familiar moments of rescuing the stuffed rabbit from the floor and wrestling a hand out from beneath layers of covers.

The once-again regular calls from the nurse's office made my day less lonely.

But the lack of a working Dexcom is beginning to take its toll.

We miss the ability to see highs and lows coming on before they're 50's and 300's.

We miss relying on the graph to show us a steady upswing after a low instead of drawing blood every 15 minutes until we're absolutely sure the number is stable.

We'd like to sleep. 

We're all caught up on everything that's going on in the nurse's office and its environs.

So I was glad this morning to find in my inbox the shipping notification for our Dexcom's new transmitter.  A combination of my slowness to order it as soon as the low battery notification appeared and the slowness of getting insurance approval for and shipping a new one has left us Dexcom-free for a week. 

Which isn't the end of the world, and I'm grateful we have the technology at all, but now that we're used to having the data and the safety net, it's really hard to do without.  Even my daughter, who is still understandably ambivalent about the insertion of and constant wearing of another device, asked yesterday about the status.  "I can't wait to have it back- I'm so tired of not knowing what's going on."  Me too.

ALARM

The meter asked nicely first, on Sunday if I recall correctly.  "Replace meter batteries soon." Or some similar request accompanied by a gentle, high pitched 'beep beep.'  It asks for new batteries periodically, and thus far we've always replaced them by the third or fourth reminder.

But we didn't. We had all kinds of excuses. We were out to dinner. The batteries were in the basement.  The phone was ringing. It was bedtime.  I'd do it after the getting to school chaos had ended.  We were about to sit down to eat. 

So today, it decided we needed stronger words:

This message was still accompanied by the gentle 'beep beep,'
though it reads like it should be accompanied by a blaring horn.




We've never ignored the gentle reminder long enough to get yelled at like this before. It worked, of course.  The batteries are changed and things are back to normal.  Sometimes we just need to be spoken to in no uncertain terms.

Weird

All day: confusion.

Check: 115.  Dexi:  250.

Check:  287.  Dexi:  140.

Lots of  'Recheck...that doesn't make sense.'

And 'Really...that's what it says.'

All day.

It probably didn't help that we left Dexi home for an errand outing.  Or that we went to the pool.  She finds that very confusing. Always.

Yet from dawn to dusk, nobody could agree.

Beditme was the most bewildering.

Check:  270.  Dexi:  240.  We thought there had finally been a meeting of the minds.  A small correction was given and some reading began.

Fifteen minutes later, Dexi asked for more blood.

Check:  138.  Dexi:  still 240.  I thought we were in for a long night for sure.

But by 10, the anticipated low had not occurred and did not occur all night.  Dexi and the meter had kissed and made up.  Today, they were all in synch...like they'd been together forever.

Technology is great.  We really love it and are grateful for all the help it gives us in managing diabetes every day.  But please visit www.stripsafely.com.  Sometimes things to awry.  They shouldn't.

The Decision

Regular readers will recall our 'mystery story' of a few weeks ago.  In a nutshell, my daughter was checking her blood sugar on a variety of meters at school and came up with numbers ranging from 140-348.  What I left out of that post was the tail end of the episode.  As we left the nurse's office, for her to return to class and me to try to remember what I had been doing before the phone rang, my daughter made a statement.

"This is why I need a CGM {continuous glucose monitor}."

We'd been talking about it on and off for a year.  The endocrinologist had given us his two cents and was ready to write a prescription if and when we decided to get one.  A friend of my daughter's got one a little less than a year ago and we'd both been watching her experience and asking lots of questions.  We'd been online, looking at the company's website and at personal experiences of bloggers.

We'd been going through a series of mysterious and challenging numbers. I was increasingly ready for Dexcom's graphs, predictions and trends, but we still had some reservations.

These doubts had mostly to do with having another 'site.'  How much would it hurt going in? Where would it go on her slim little body? Would it show under shirts?  Ballet leotards?  Bathing suits?  Would she care?  How much?  Would it be uncomfortable?  Would it get in the way?

There was also the matter of another device to carry.  She's already carrying a meter kit, juice box and cell phone. All of this fits into a cute little purse not too bulky to carry around at school or to a friend's house. The Dexcom receiver is small, but add a protective case of some sort and it gets bigger.  Would she need to ask Santa for a purse as big as she is?

Because these concerns were important to my daughter, they were important to me.  I needed her to tell me that she was willing to accept the discomfort and responsibility which would come with wearing another device.  I needed her to want it not just because it would help me and her medical team manage her blood sugars better.  It was important that she realize how it would help her in everyday situations, and indeed she did.

"This is why I need a CGM," she said.  That was all I needed.  I went straight home and picked up the phone.  We now own a CGM.  In fact (spoiler alert for future posts) she's wearing it right now.

And so far she likes it.

When Is Enough Enough?

After our last endocrinologist appointment at the end of the school year, we decided it was time to look into a continuous glucose monitoring system.  We also decided that we'd wait until fall.  This decision honored my daughter's concerns about having things stuck all over her during bathing suit season as well as my concerns about keeping things adhered to her during the season of water and sand. 

At the end of the summer we visited the orthodontist.  The idea of some kind of braces sometime in the future transformed into definite braces this January.  These won't be just run of the mill braces.  We left the appointment understanding that she will be chewing with only her four back teeth for between eighteen  months and two years, and that she will be wearing head gear, thankfully only at night.

So here she is...about to turn twelve.  She's growing quickly, and at that adorable-only-to-parents awkward, gangly stage. She already has an insulin pump toggled to her at all times.  She already has to carry around a bag full of accouterments everywhere she goes.  Now we're going to fill her mouth with metal, make eating anything coarser than applesauce a challenge and attach head gear to her at night.

Can you see why her enthusiasm about the CGM is waning?  Tacking on another bionic piece and adding another item to her already overloaded purse doesn't sound so appealing, no matter the benefits.  Lets add that it will probably beep at the most humiliating times.

Can you see why, if she knew anything about 70's television, she would be asking why we want to turn her into the bionic woman? 

We'll still proceed with the CGM.  Once those crazy braces go on, it will probably be even more important to keep a closer eye on those blood sugar numbers, at least until she gets used to eating with them. 

But from a psychosocial perspective, I'm reluctant.  Everyone's awkward at 12.  How much equipment can we adhere to her before the balance tips from awkward to crazy robot girl?  When is enough enough?

Bits and Pieces 3

 It's another in an occasional series of posts collating and commenting upon some interesting (at least to me) diabetes links:

Animas has submitted for FDA approval for their Animas Vibe for use in the U.S.   The news is summarized here on Diabetes Mine. This product sends data from the Dexcom G4 continuous glucose monitoring sensor directly to the insulin pump, eliminating the need to carry an additonal receiver.  Also notable in the article is that Dexcom has submitted for FDA approval for pediatric use of their G4 product, hopefully greatly reducing the red tape families must currently weed through in order to obtain it for their children under 18.

While our family loves to travel and see new things, the airport experience has often left much to be desired.  If you haven't done so, please take a moment to sign this petition to standardize TSA screenings for diabetic persons using wearable self-monitoring medical equipment.  A look back at a couple of our family's airport experiences can be found here.

It was fascinating to follow Anna Floreen's experiences wearing a Bionic Pancreas.  There are seven pieces up on Glu, the first of which is linked here.  I'm a realist.  I know that the research process moves slowly and that the FDA approval process for even the simplest of things is grueling. Yet reading about someone out in the world wearing equipment which eliminated her need to actively manage her diabetes gave me great hope. One of many take-aways for me was that while this technology will not constitute a cure for diabetes, it will be life changing.  Yes, there will still be physical baggage of sites and technology to carry around.  Yet the mental baggage will be so much reduced it made me wonder what fascinating things I would think about should technology take over so much of the diabetes drudgery.

Some of these developments seem, perhaps, more significant than others.  Yet the bionic pancreas won't be completely anxiety-free if we can't get it through airport security without a fight or a panic attack.

I Didn't Mean To Be Rude

As a parent of a child with diabetes who is not constantly within 50 yards of me, I am dependent upon my cell phone.

It is within earshot whenever my daughter is not.

I'm incredibly grateful for this technology.  It allows me to be out and about doing my thing while she's doing hers.

The issue is that my cell phone rings often.  When it does, no matter where I am or what I am doing, I need to pay attention to it.  If it is the school or my daughter calling, I need to answer it.

As a result,

I am the woman blocking the aisle in the grocery store while completely focused on her phone conversation.

I am the woman texting during the concert.

I am the woman who didn't politely interact with the cashier at Target.

I am the woman answering her phone while on a date with her husband at a quiet romantic restaurant.

I am the woman texting in the dentist's chair.

I am the woman whose phone call interrupted the meeting. Twice.

When I am able, I make a quiet apology for the interruption my phone use has caused.  Sometimes, if
I know the situation could repeat itself, such as in a meeting, or during a long dental procedure, I'll briefly explain my behavior. 

More often those around me are left assuming I'm just terribly inconsiderate.  To those fellow restaurant patrons, concert goers, and grocery shoppers, I offer the following by way of explanation:

I'm sorry for altering the romantic atmosphere/creating a brief moment of light in the dark theater/standing in front of your favorite cereal.  It was my daughter on the phone.  She has diabetes.  She was calling because she had a low blood sugar/her pump was alarming/someone brought cupcakes for the class.  She needed immediate medical advice. 

I didn't mean to be rude.

Technology

Our family entered the modern age last week.
Diabetes technology we're familiar with. I truly don't know how we survived before the remote control/meter for my daughter's pump.
Other technological advances have come more slowly though. Maybe we're a bit old fashioned. Maybe we're somewhat frugal. But finally the time had come.
First we got my daughter a cell phone. I tried, hopefully not in vain, to impress upon her that it is primarily for diabetes calls and texts to me. She's thrilled to have it!
Then I got the smartphone I'm blogging from now. Now to justify it I need help finding some good diabetes apps. Any suggestions?

The All-In-One-Inator

Today's diabetes blog week post asks me to invent my 'fantasy diabetes device.'  The 'magic cure machine,' would be great, but I'm a realist at heart.  Here's one I think my daughter will see in the not too distant future, with some details we'd find particularly helpful:

One site!  One device!  All your diabetes care needs rolled into one!

All the tools you need to manage your Type 1 Diabetes consolidated into one easy-to-use system.

• One site providing insulin infusion and a continuous glucose monitoring sensor
• A pocket-sized handheld touchscreen device which provides
• Blood sugar meter
• Insulin Delivery Remote
• Multi-featured log-book
• use touchscreen to write your own comments ('stupid donut')
• wireless link for download
• pesonalized charting, graphing, averaging
• Continuous Glucose Monitoring with multiple high and low bg alarm options
• Carbohydrate counting guide with personalization ('Steve's pizza: 1 slice=40g.') 
• Flashlight feature
• Programmable reminders for bg checks, boluses and site changes
• Insert notes anywhere. For example:
• reminders of treatment parameters with each bg check for children and caregivers
• notes to children regarding party or playdate foods in absence of parent
• make a note when carbs for a new food are guessed
• note when the pump has been unplugged for swimming or sports
• Optional cellular and wireless internet service, making it your only device
• All designed, manufactured and shipped by the same medical device company right to your door, right when you need it.

When I described the device to my daughter (who added the touch-screen feature and expanded the notes one), she thought the 'all-in-one-inator' would be a good name for it.  That's what Dr. Doofenshmirtz from Phineas and Ferb would call it.  He'd be hard pressed to find a way to use this invention for evil, though.