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Posts from the ‘Dexcom’ Category

BOLUS: Beware Of Loose, Unsupervised Snacks.

I graze.  I’m a grazer.  Visually speaking, my food choices are spread out over a gigantic field and I run through, grabbing bites here and there and never properly taking amounts or serving sizes into account.

“How many grapes did I just eat,” is a common, whispered question.  “Did I bolus for that protein bar?” is another one.  “Hey, I only had eggs and not toast – how many carbs did I bolus for, and what needs to be consumed now so I don’t hit the deck?”

I am good at going through the motions of diabetes management, but I have been slacking on minding the minutiae of late.  I don’t sit down to formal meals throughout the day (schedules are nonexistent at the moment), so keeping track of the food I’m eating has been a challenge.  Grazing makes for dodgy carb counting.

I need to mind my B.O.L.U.S:

Must Beware of Loose, Unsupervised Snacks!  When carbs are roaming around unsupervised and unbolused-for (terrible grammar, worse when spellcheck changes it to “unbloused-for”), blood sugars go high and stay there because I’m chasing my insulin-tail or I go low because I’m over-estimating.  Insulin is potent stuff, and SWAG’ing it makes for Ms and Ws on my Dexcom graph.  If I can just pay-the-fuck-attention to what I’m eating, I’ll have fewer frustrating results.  Right? RIGHT??

The more I mind what I’m eating, the more even my blood sugars will be.

Now let’s see how that theory shakes out, as I attempt it for the 10,000th time since diagnosis.

The Dexcom / Mac Dance.

Sharing, because that’s what friends do.

Brian Bosh, living with type 1 diabetes and also apparently a very clever guy, found a workaround for uploading Dexcom G4 data to a Mac computer. Yes, you read that correctly.

“I created Chromadex because I was trying #DIYPS but hated carrying around a second phone. I figured I was close enough to a computer enough of the time that I could run an uploader on there and it would work well enough. There already is an uploader for Windows and Android, but no way to do it on the Mac. (Or Linux for that matter.) Once the uploader was built, though, I thought it really ought to do some of the same things Dexcom Studio did, since that’s not available on Mac either: If I had the data, I might as well offer their reports too. At this point it will upload to #DIYPS, NightScout and run three reports. It still takes a little bit of wrenching to get it to upload and I’d like to make that easier. Had a few people ask if I could make it work with MMOL. I’d like to get more reports working.”

I haven’t downloaded my data yet via this application, but others have:

If you want to try it for yourself, visit the Chrome web store and download Chromadex for free. And if you like how it works, please thank Brian.

#wearenotwaiting

Clouding on the Road.

The CGM in the Cloud concept matters most to me when I’m traveling alone.  While I was in Orlando last week, my bedside table looked like this at night:

A Moto G hooked up to my Dexcom G4, sending CGM data to the cloud.

And that data being routed to my family back in Rhode Island and to my wristwatch.

A few questions I heard from people throughout the conference:

“What peace of mind does it give you that the CGM itself doesn’t?”

I slept better with this thing rigged up.  It’s a clumsy set-up (all those cables and wires and plugged-in-ports) but the ends justify the means.  Chris could see my data while I was sleeping, and his system would alert him to any wicked overnight hypos, should they occur.  That’s some good peace of mind for me when I’m a plane ride away from my support system.  While my overnights are usually unnervingly spot-on (nailing down my overnight basal has been the luckiest break ever, and I blame my in-range A1C on spending those 6+ sleeping hours in-target), low blood sugars still creep in and can cause chaos.  I liked being hooked up while I was sleeping.

“Why wear it connected throughout the day?”

It was more convenient than I thought to have the graph running on a watch.  I didn’t realize how often I go digging through my bag for my Dexcom receiver until I spent a few days not doing that.  I like the seamless flick of the wrist and the “Hey, that’s my number,” and moving one sentiment.  But, to be honest, I think I kept it hooked up during the day partly because I knew people would have questions/want to see the rig and I wanted to be able to show them. Nothing answers questions better than seeing the system “in the wild.”

“Why don’t you wear it all the time?”

What made it less convenient to keep the system “clouding” on this trip is that I haven’t purchased a data plan for the Android phone yet, and have been running it off of open wifi signals (the hotel, convention center, restaurants, etc).  That’s a definite hurdle, and since the system is most important for me to run while I’m sleeping during travel (or home while Chris is traveling), using wifi seems to work best for my needs.  It’s simple to connect/disconnect from the cloud system as I need to.  I’m also hesitant to tax the USB port on my Dexcom receiver because I don’t have a spare receiver and I also don’t want to break the device I have come to rely on.

“Do you really want your family seeing your numbers all the time?  What about your privacy?”

Really good question.  This is why I’m looking forward to the Dexcom Share application, because that app will allow me to revoke access to my data if I choose.  As it stands now, my CGM data is clouded to a site that I have shared with my husband and my mother, and if I’m hooked up to the CGM in the Cloud system, they have access to my data.  It’s not a password-protected application.  I would love to see the data protected by some kind of password system.  I appreciate the option to share the data for my safety, but not for their scrutiny.  However, when it comes to the overnights while I’m traveling, I don’t care who sees those numbers.  Their having access makes me feel less vulnerable, and I’m willing to sacrifice my data privacy for those 6+ hours.

Clouding CGM data is a work-in-progress.  Much like life with diabetes.

#wearenotwaiting

 

 

Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

We Are Not Waiting: CGM in the Cloud (Part 2).

Continuing from last week, I’m picking up this morning with Laurie Schwartz, mom to Adam (T1D) and an active and supportive voice in the CGM in the Cloud group.  In the last week, I’ve had many interactions with people from the CGM in the Cloud group and every single person has been happy to share their experiences, eager to share their expertise, and more than patient with my questions because their goal is to help people.  Laurie is no exception.  Laurie Schwartz is a retired dentist, now residing in Colorado and partnering with her husband in life, love, home-education of three kids, and pursuing a better understanding in diabetes management for her son.  And today, I’m really pleased that she offered to share her experiences with CGM in the Cloud here on SUM.

Kerri: What’s your connection to the diabetes world?

Laurie:  Diabetes has been a very large and recurring theme in my life since 1980.  
I have lived with diabetes from the perspective of a child watching a diabetic parent struggle.  I have experienced the disease as pregnant woman fearing the damage to an unborn child when diagnosed with gestational diabetes. The most emotionally challenging connection is definitely as a parent caring for a child with this disease.  Recently, I have added the view from an early diagnosis for myself as I become more and more glucose intolerant.

My father was a brilliant physician who suffered for decades from the complications of insulin dependent type 2 or he might actually have been misdiagnosed and was LADA.  His struggles with fears of lows as a surgeon, to poor control and long standing hyperglycemia from lack of frequent monitoring, to my witnessing all of the devastating complications he lived with has influenced me heavily in my approach to our son’s current management.

My third and youngest child, Adam was diagnosed in June 2008 with type 1 at the age of five years old.  Our diagnosis story is included in a book “Lifesaving Labradors.”

Kerri:  So how did you find out about the CGM [Continuous Glucose Monitor] in the Cloud group?

Laurie:  In the pursuit to have every tool possible for maintaining “normal blood sugar”,  I found myself embracing the benefits of the diabetic alert dog.  I have been active in the Diabetic Alert Dog community since training our alert dog in 2010. Willow Wonka is our son ‘s alert dog. Willow is a very skilled and polished dog, who has contributed significantly to our ability to maintain Adam’s a1c between 5.4 and 6.0 since June 2011. My use of the alert dog with the CGM has been our focus for better management.

On April 20, 2014, our close friend who heads a wonderful diabetic alert dog organization, Crystal Cockroft of Canine Hope for Diabetics, screenshot and texted me a picture of a Pebble watch with CGM information.   She thought I would like the technology.  I immediately wanted to jump on a plane to San Diego and pay any amount of money to acquire the technology.  I was shaking with excitement over the envisioned benefits the system could offer.  We had to have it!

The picture was posted on her Facebook friend’s page, Jason Adams. 
I contacted Jason minutes later on Facebook and he” heard” my desperation.  He assured me that a plane trip or an expensive fee was not required.   By April 22, just 48 hours later, we had purchased everything and had the system working.   Then, remarkably within just 3 hours, the CGM in the Cloud potentially helped us avert a dangerous medical crisis.

Kerri:  Within three hours?  What do you mean?

Laurie:  My desperation to acquire this technology resulted from a culmination of stress due to five months of bitter fighting with our mail-order pharmacy to stop shipping us 90 day supplies of warm insulin. Just the days earlier, I had finally gained approval from our insurance to receive local retail pharmacy, in the hopes it would be properly stored and handled cold insulin.  My recent success was a result of my efforts the previous week frantically arguing that bad insulin would kill my child because his body and our pump settings were all adjusted to the unknown effectiveness of warm less effective insulin. My claims were my true fears but I didn’t truly understand what that could look like.

We have had our kids in year-round swim team for four years mostly because the exercise is fantastic for blood glucose control.  We have systematically created a process to maintain stable blood sugars during practice with Adam’s consumption of simple glucose drinks.  We check blood glucose midway through practice or more frequently and one parent is always close by.

Our prior success in managing to maintain steady blood glucose even with potentially weak insulin gave us a false sense of security.  In hindsight, it was a recipe for disaster.  We were so comfortable with our carb/exercise protocol that I was even taking the alert dog to classes away from our son during some swim practices.

University of Denver Hilltoppers has 80-100 kids in the pool every evening.  On this night, when we had the Cloud system for the very first time, I was at dog agility class with Willow.   My husband was swimming his own laps in the open adult lane with Adam just 2-3 lanes away.  I watched on the CGM in the Cloud Adam’s CGM readings decreased and then report a 49 mg/dL.  I repeatedly texted my husband, then determined he was probably unreachable by text because he was swimming and for the first time since Adam was on the team, called the pool office and asked that Adam and my husband be removed from the pool to check his blood glucose.  The BG check revealed Adam was 70. For us, a BG of 70 is not necessarily an emergency but Adam had been consuming simple glucose all through the practice and should have been 100-140.   My husband gave him (an unusually large amount for us) 15 g of carbs without additional insulin, waited 15 min. and with Adam’s insistence that he was fine, let him back in the pool.  Adam got out five minutes later reporting feeling extremely low and sick.  His feelings of that symptomatic persistent low did not resolve appropriately as his BG would not increase above 70 mg/dl for about an hour even with additional large amounts of dextrose and interrupted insulin.

We can only attribute this never before seen persistent low to the use of the new effective insulin combined with the effects of heavy exercise on his body’s insulin sensitivity.  The timing of our access to the CGM in the Cloud was so fortunate, and I believe lifesaving.  The realization that we so narrowly escaped a tragic situation motivates me to continue to express my gratitude and assist in other T1 families learning about this amazing system.

Kerri:  That’s some tech validation, right there.  Is this in line with what you see being discussed in the CGM in the Cloud group?

Laurie:  The group was created to share the personal experiences and observed benefits of the system.  Our swim practice incident was just one instance that demonstrated that this technology advance to the CGM system was too important to keep private.

The group discussions are varied from sharing success stories, sharing how distance monitoring allows for parents to coach grandparents and friends while away with a T1 child, to assisting in technology set up questions, and to discussing future development ideas and approaches.

All of the contributions made by the group members assist in the direction of the future advancements to the system.  [Editor's note:  The emphasis added was mine, because her statement is beautifully true.]

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?  

Laurie:  This is a technology was created out of necessity by real parents living with the shortcomings of what the industry had to offer.  The ever-growing bank of ideas and knowledge is flourishing with new approaches from all over the world.  This group is collaborating to create software and hardware advancements for T1 monitoring, data transfer, and utilizing this community’s conversation to draw the direction to which the effort should be best focused.

Kerri:  As I had asked John last week, do you fear the FDA?  Or the companies that make the CGMs?  What are your concerns about how Big Companies might view this movement?

Laurie:  I am concerned that greed or other human failings might slow the progress of this technology.  The FDA has its role to review the safety of medical devices.   In this case, the FDA has played its part by testing the inserted sensor materials, the exposure to the transmitter signal and reviewed the data reliability in studies comparing the BG and venous draws to the CGM readings.

In my opinion, the FDA has little place in restricting how the patients use their own medical data.   Once collected, the data is used for improving and intelligently monitoring diabetes management decisions and should not be restricted.  How the data is usefully transmitted is not an FDA matter, it should not be restricted or slowed.

The cloud group is not about redesigning wonderfully effective medical technology, but rather improving user interface. The biggest facet to effective diabetes management is constant awareness of your body and its metabolic status.  Making that information as convenient as glancing at your watch or smart phone is invaluable to the process. Dexcom is a leading company in the CGM industry, approved by the FDA as a medical device company and should focus its efforts on continuing to improve materials for interstitial fluid monitoring of glucose.  How the patient uses or shares the medical data should be a patient decision.  If the open market technology world designs advancements to support the Dexcom technology, the tech advancements can promote the company’s continued success in the industry.  This can be a win-win for Dexcom and the T1 community through the careful construction of continually improving the technology bridge.

Kerri:  Okay, so let’s look at some of the nitty-gritty.  How easy is it for members to get one another suited up and running on a remote device, and how does the CGM in the Cloud community help one another in this process?

Laurie:  Many new members have assisted each other in the set up process.  Jason Adams had contracted a freelance university student, Rajat Gupta to help him set up his own Cloud system.  Without hesitation, Jason shared that with me, a complete stranger, connected by desperation to help one’s child. Jason and Rajat assisted in our set up and many many more set ups since.  Rajat’s system has been very successful and easy to utilize for the non-tech families.  Our setup was literally a 20 minute process once the android, pebble watch, cords and case were purchased. Our heartfelt gratitude goes out Rajat for continuing to support this community with many uncompensated hours.

Jason Adams started the Facebook group to help share the clear benefits that having the Cloud system offered.  Since that beginning where Rajat offered an emailed application, the group has grown and and additional option to acquire the Cloud system has emerged with community support for a “Do-It-Yourself” system.  Regardless, of which way a PWD or CWD acquires the CGM in the Cloud, the system offers unique access to real time distance monitoring of CGM data.

Kerri:  And last, but certainly not least – why is this CGM in the Cloud technology important to you?  

Laurie:  Personally, every single advancement is an opportunity for better control.  I remain tormented by my father’s struggles with diabetes, and I am driven to help my child live better with diabetes.  We have many systems in place to assist us in our management goals.  We strive to maintain non-diabetic glucose ranges to the best of our ability.  The effort it takes to manage tight control is very complex. and requires constant vigilance  We appreciate various devices for their contribution and do not focus on shortcomings. We embrace any and all systems that can help us to make better, faster and smarter management choices.  We pursue the latest most accurate blood glucose meter, the least intrusive pump, the best trained alert dogs, the newest generation and best rated CGM and any extension that can be added to those systems.

The BG meter is a static point in time and as quickly as that reading is offered in a few short minutes a very different glycemic situation could be occurring.  Considering the margin of errors each and every BG reading may reflect, it is almost based upon tradition or superstition to why anyone uses a BG meter for making important decisions regarding the titration of a lethal drug like insulin.

The alert dogs are preemptive tools requiring proximity to the T1.  The DADs (diabetic alert dogs) give a signal that alerts us to impending changes prior to the meter and CGM. The dogs give us a heads up that we need to pay attention.  That heads up is usually significant in shortening the amount of time or our son is out of range with a high or low event.   The biggest drawbacks to their service is the necessity of proximity (limits set by distance scent can travel) and the handler’s ability to interpret and utilize the advanced warning alert.  By proper interpretation of the dogs alerts extremes glycemic events can be minimized and ranges tightened.

The CGM shows trends and data.  Reviewing data gives valuable information for discrete dosing adjustments to basal rates and bolus ratios in the short and long term.  There is overlap with the CGM high and low alarm alerts with the dog’s alerts to some extent, but not quite.   The diabetic alert dog’s alerts are usually ahead of the meter, CGM and symptoms and the CGM historically lags the event.  Similar to the dog’s scent ability, the CGM is also restricted by proximity through the limits of range of signal from the sensor’s transmitter to the receiver.
 
What the CGM in the Cloud uniquely brings to our arsenal of management tools is real time distance monitoring.  No other tool allows for the person with diabetes to have the assistance of a person at distance contribute to the management in real time.  The distance component is lacking in the current management tools.  By having the Cloud broadcasting a constant flow of information that can be accessed by interested parties, those parties can assist in collaboration for better treatment decisions, faster or slower or more discrete interventions.

From a social and emotional perspective, the Cloud system also offers a more discrete monitoring contribution.  With this technology, we can assist our child in treatment decisions in a more timely fashion but also with less unnecessary intrusions to the parent-child relationship.  We can lessen our queries for CGM readings or BG results and more unobtrusively suggest a timely intervention of a BG check, suggest a small carb snack or insulin dose.

 By utilizing the Cloud, some of the relationship interruptions caused by diabetes are minimized.

With more intelligent distance monitoring by parents; the teachers, babysitters, grandparents and parents at play dates have support staff, experienced diabetic managers on their team to help the T1 child safely stay closer to normal ranges.

For a parent to develop strategies to promote safe independence, safety need not be compromised.  Traditionally, parents gave their children carbs before bed.  The bedtime snack was to help prevent a low during the late hours.  That same snack probably caused a high but without testing or monitoring the highs were not confirmed and the child was hopefully expected to survive the night without a deadly low.  Sleepovers and bedroom assignments were dictated by proximity to parents’ bedroom because that was needed for monitoring.

Sending a child to participate in a sporting event or physical activity usually involved increasing the blood glucose, so there was a margin of error for the exercise induced energy drain.  With the CGM in the Cloud, more timely monitoring can provide the opportunity for the parents to avoid unnecessary highs as a prevention technique for lows.

The real story is in those who created this technology. The determination and drive of these parents with T1 children to work tirelessly to create a system that overcomes the limitations of current medical technology is so impressive.  The value in this system is that it was forged out of necessity.  These parents had a vision and they created and labored to succeed. 

Their decision to their solution with complete strangers speaks to their integrity and generosity.  Our interest, gratitude and support should be focused on their efforts and selfless contribution.  These individuals have careers, families, sleep-deprivation from living with children with T1 and they are not looking for the fast buck or to “cash in.”   Subsequently, others will come looking to help and develop this process. There will undoubtedly be some looking to make a quick buck,  but the developers released their work to open source for the good of the T1 community.  Regardless of who continues to develop this system, my hope is that the diabetic community will be improved as this much-needed technology continues to develop.  I offer my information as an end user of the CGM in the Cloud and my enthusiastic support of the system for its life saving and life improving capabilities.

Thank you so much, Laurie, for sharing your story.  To find out more about CGM in the Cloud, you can visit the Facebook group (up to 2,779 members now) and connect with folks who share your desire to have the data where, when, and how you want access to it.  And later this week, I’ll show you the system they helped me build and why it matters to me, as an adult with diabetes.

Dexcom Rash.

The itch started back in July 2012, when I pulled off a Dexcom sensor and saw a prickly, hive-ish rash underneath where the sensor and transmitter had been placed.  Blaming it on the summer heat and the recycled, dry air of airplane cabins, I figured it was a one-time thing and I’d be sorted out on the following sensor placement.

Which ended up being an “oh hell no – here’s a big, fat rash from the adhesive” experience instead.  I don’t know what changed (the adhesive? my body’s chemistry? my skin sloughed off overnight and was replaced by Super Sensitive Skin?), but I do know that I need to take some extra precautions to this day in order to comfortably wear my Dexcom sensor.

A search phrase that leads folks to SUM is often “Dexcom rash,” so I wanted to make sure that information was easily findable.  Not being able to wear the Dexcom due to adhesive reaction/allergy was frustrating, so if this information can help make life easier for PWD who want CGM data, I’m all in.

Here is some decidedly NON-MEDICAL, ANECDOTAL (talk to your doctor before making any changes to your medical regimen, please and thank you) solutions aimed at avoiding the Dexcom rash.

I’ve used a few different methods to help keep the Dexcom stuck, or to avoid the rash, but the regimen that has been tried-and-true and actually working for the last year and a half is this:

  • After showering, make sure the skin is completely dry.
  • In the colder months, when the air is dry and the heat in the house makes my skin particularly sensitive, I spray a blast or two of steroid inhaler on my skin where the sensor is to be placed.  This is a method I learned about from a reader, and discussed with my endocrinologist before trying.  She thought I was bananas, but she gave me the go-ahead anyway.
  • After applying the inhaler blast (but in mild weather, without applying it), I placed a Johnson & Johnson Tough Pad against my skin.  (It’s like a thick, gel-ish bandaid.)
  • I stick the Dexcom sensor over the Tough Pad (so that none of the sensor adhesive is touching my skin) and insert the sensor straight through the Tough Pad.
  • Then it’s business as usual – stick the transmitter in and start up the receiver!

Usually I can get the recommended seven days without having any kind of skin flare up, and when the sensor starts to peel away prematurely, I stick some Opsite Flexifix tape onto the loose bits to keep things stuck.

And that’s it.  It’s not medical advice, but it is a way to bypass the potential rash and to continue use of a medical device I rely on to help keep me safe.  I hate itching … unless it’s that advocacy itch.

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