10th grade

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Not a very descriptive title. Could it have anything to do with diabetes? Um, kinfof.

Caleb got on the bus for his first day of 10th grade this morning. My diabetes preparation for this day was little more than, “do you have what you need?” I don’t really remember his answer. Eek.

I have sitting next to me completed, signed medical forms. I did call in a couple of renewed prescriptions (epi-pen and glucagon) which I still have to pick up. A week ago, I reminded Caleb to email his new teachers to introduce himself and explain he may need to eat something or check his phone during class and why. Yeah – that’s about it.

Preparation for school used to be weeks of advanced planning and creating charts and cheat sheets and of course the in-depth 504 plan. We met with or at least spoke to anyone with whom he came in touch. I made sure the bus was routed to minimize his time on it. It was comprehensive, exhausting, necessary and kept him safe at school.

Things are just more rote with a nearly-16-year-old. I do virtually nothing for Caleb’s care. He hasn’t needed assistance from anyone in school for years now. It’s just not as complex as it once was. But there are ducks we need to get in a row.

Today is a short day – a day added to the calendar because there were too many cancelations last year after the May 15th storm. School “really” starts on Tuesday. By then I’ll have the forms, meds and supplies in place for drop-off to the nurse’s office. I’ll be a little more specific with Caleb about what he’s packing in his PDM case. I will have pushed him to set up a 504 meeting for the year and confirm that he has heard back from each of his teachers. I’ll also help him get the ball rolling to ensure he has the accommodations he needs for the SAT in October. We’ll get it together.

But for today, it’s just 10th grade!

 

StashBandz and other running belts for D-Equipment

Adjusting to a tubed pump was easier than expected. Caleb loves his OmniPod, has been a user for more than ten years, and only entertained the thought of a tubed pump because it is the only closed-loop option currently attainable. One of the drags of a tubed pump is having to have it on you at all times. Surprisingly, floating in the bed at night works out better than storing it in a pocket, or clipping it to his PJs. Keeping it in his pocket during the day is easy enough once he figured out what to do with the tubing while wearing a button-down dress shirt. Placement during activity is harder to manage.

Caleb dances competitively, is an avid biker and plays baseball. These all proved to be awkward with a tubed pump. Also, for Loop to work, his phone and Riley Link need to be on him (or at least in close range of him). We used a SpiBelt daily wth the Dexcom Seven Plus system. That was a perfect size to store the receiver that had to be close to him in order to stay in range. The SpiBelt is a good solution for the pump, but doesn’t provide enough room for everything else. (Note, we did not try the multi pocket versions of SpiBelt).

Caleb has used a FlipBelt which works better because it can hold everything and keep it pretty secure against him. He likes the zipper compartment for security.

StashBandz is a product I hadn’t heard of until I received an offer to trial it for free. We were sent two black StashBandz Running belts, one extra small and one small. Caleb, my daughter, Lila and myself have all used them.

Lila uses it to store her phone while running so she can listen to music. I’ve used it as an extra pocket while out and about and to store my phone and keys while biking. Caleb uses it to store his pump, Riley Link, phone and carbs while biking and to hold his pump while playing baseball.

When it’s empty, it’s a snug piece of fabric that rests nicely around your hips. The added width of the belt seems to add to its security in placement. It’s comfortable and barely noticeable. When it has a smaller cell phone in it, it’s kept snug to your body with no noticeable movement while walking, running or biking. My larger cell phone was a little awkward because the larger flat surface has less of an opportunity to hug your body’s curves. Stashbandz still kept it snug and secure,  it’s just not visually appealing to have this large rectangular bump sticking out of you.

It fits me best when it’s around my hips. If higher, I don’t find it as comfortable and it has too much movement and folds over. As far as I can see that’s not how it’s intended to be worn anyway.

The belt itself has very little, if any, bulk. I’ve worn it under a dress and under a pair of Tiros and it’s seamless. It only gets bumpy and bulky based upon what you put in it. For running and biking, none of us are concerned with our appearance. For baseball, Caleb chooses to wear the Stashbandz higher, above his waistline and under his shirt, with only his pump in it. He opens Loop for games and manages his bg “old school.”

We’ve found Stashbanz to be a good option for stashing our stuff while on the go.

 

 

 

Tubed v Tubeless | Insulin Pump Comparison

IMG_2981It’s been more than ten years since Caleb began pumping. That’s more than 1,500 Pods, roughly estimating.

Caleb was four when we decided to use OmniPod. He didn’t have much say in the matter. Over the years, we’ve talked about other pumps. I thought he might be intrigued by the T Slim because of its slick touch screen. Not so. “Does it have a tube? Yes? No, thanks.” Simple as that.

Traveling on his own and wanting the benefit of closed loop technology that was only available with a tubed pump changed his perspective. Now that we have first hand experience with a tubed pump, I can provide a user comparison of it to a tubeless one.

– The process of changing a site and reservoir is much more involved than filling a Pod and inserting it. There are so many more steps. It’s not difficult – Caleb took over immediately and I don’t even remember what to do – but it’s definitely simpler with OmniPod.

– Being tethered takes some getting used to. Caleb adjusted quickly. Figuring out what to do with the tube with certain clothing, in particular a dress shirt and khakis, was a little perplexing. I sympathize with the ladies wearing dresses.

– This is probably no longer relevant with newer tubed pumps, but the screens and menus of the older model Medtronic pumps – just ugh.

– I now appreciate all the comments about failed Pods. This was never a problem for us. Yes, we had the occasional Pod error, but we didn’t know any differently. It’s what we experienced from the very beginning and we learned to be prepared for it – always carrying extra Pods, insulin and alcohol. No biggie. After using a tubed pump, which almost never errors (we did have a pump go kaput – not fun), I understand how someone switching to OmniPod would find these errors completely unacceptable. Screeching alarms after putting on a staticky winter coat is just not something you experience with a tubed pump. It’s much less risky to leave the house without a site/reservoir change. It’s not risk-free, but the risk is way lower based on our experience.

– Insulin waste. This is another thing I never thought was that big of a deal. The Pod needs a certain amount of insulin to activate. It stops working after 80 hours. Caleb uses less insulin in 80 hours than what is needed to fill a Pod, especially when he started and was using 2 units a day! Yes, I knew insulin was being wasted, and I wasn’t above extracting insulin from a Pod if it failed within the first 24 hours.  Caleb thinks it’s a hoot to see how low he can get his reservoir before changing it, even considering letting it go overnight with only 6 units left. Not much waste with a tubed pump.

– Remembering site changes is far easier with the Pod. You have no choice and the alert is relentless. There are times when I ask Caleb – when was your last site change? Silence indicates unknowing. I try to remember to update Nightscout with all his site, CGM and reservoir changes, but I don’t always. I don’t even know the longest time he’s gone with a single site, but it’s over the recommended three days.

– The integrated meter in OmniPod is no small deal. It’s just so convenient and one less thing to possibly forget. Caleb continued to use his PDM as his meter while pumping with Medtronic. It’s worthy to note that the integrated meter will go away with the Dash system.

– There is no comparison regarding the ease of use of OmniPod for sports and similar physical activities. Having to figure out what to do with a tubed pump is just a big pain in the tush. Caleb disconnected for a couple of dance competitions. That didn’t go too well for his bg. He wears it in a belt under his shirt for baseball. That’s less than ideal, for sure. He disconnects to swim – again, his body is not fond of missing any kind of basal insulin and trying to make up for it through microboluses is not something with which we’ve had success. Trying to protect it for paintball – we didn’t bother. He went OmniPod for that one.

– There are more placement options with OmniPod. I know people get creative with weaving their tubes from all spots on their body. It’s so much easier with OmniPod to rotate sites without worrying what to do with the tubing. Caleb sticks to abdomen and legs with Medtronic.

Caleb’s use of Medtronic was planned as temporary – we just wanted a way to help him get through his trip. It seems every time we talk about switching back, it’s deferred to the next site change. For us, OmniPod is the preferred pump choice, but it’s hard to leave the world of Looping once you’ve had a taste of it.

 

 

 

 

OmniPod and T:Slim Offers for Animas & Roche Customers

Both Insulet Corporation and Tandem Diabetes Care have created welcome programs for Animas and Roche customers to try their pumps at reduced costs. Roche announced the discontinuation of their insulin pump in the US earlier this year. Animas announced their exit last week.

Insulet Welcome Program

 

Qualified customers can trial the OmniPod system at no cost at all for about a month (as long as ten Pods will last). More info here: Insulet offers no cost Welcome program to Animas and Roche users.

Tandem Diabetes Care offers the Touch Simpicity Today Pump Access Program:

For a limited time, eligible Animas pump users can use a Tandem insulin pump for the remainder of their Animas warranty, up to 24 months, for a one-time payment of $999. This amount can be credited to the purchase of a new Tandem pump and/or supplies at the end of their current pump warranty period.

More from Tandem Diabetes Care on Animas’ decision to exit the pump market here.

FDA Updates #Afrezza Prescribing Info

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Yet another FDA announcement from earlier this week…

The FDA has approved the inclusion of new data on onset and duration for Mannkind’s Afrezza prescribing information:

Full release with complete details of each of the highlighted items mentioned below:

Afrezza (insulin human) inhalation powder is approved by the FDA to improve glycemic control in adult patients with type 1 and type 2 diabetes mellitus. It is the only inhaled rapid-acting mealtime insulin available in the United States. Afrezza is dosed at the beginning of a meal and begins to appear in the blood in approximately one minute1.

Key highlights of the label update:

  1. 1)  Inclusion of study data that describe the time-action profile by dosage strength, showing first measurable effect starts in approximately 12 minutes, peak effects occur approximately 35 to 45 minutes after dosing and return to baseline after approximately 1.5 to 3 hours for the 4 and 12 unit cartridges respectively.
  2. 2)  Clarity on “Starting” and “Adjusting” mealtime dose.
  3. 3)  Updated pregnancy and lactation section to conform to current FDA label guidance.

#Animas Exiting Insulin Pump Business

Screen Shot 2017-10-05 at 8.15.38 AMAnimas is discontinuing production and sale of its insulin pumps. Current customers
to be referred to Medtronic.

Edit 10/10/17 Both Insulet and Tandem Diabetes Care have offers for Animas users. More information here.

Full release here. 

Animas Corporation, one of the Johnson & Johnson Diabetes Care Companies, today announced that it intends to discontinue the manufacturing and sale of Animas® Vibe® and OneTouch Ping® insulin pumps, close operations and exit the insulin pump business.

Animas has selected Medtronic plc (NYSE: MDT), a world leader in diabetes, as its partner-of-choice to facilitate a seamless transition for patients, caregivers and healthcare providers. Patients using an Animas insulin pump will be offered the option to transfer to a Medtronic pump.

Abbott Freestyle Libre FDA Approved

Screen Shot 2017-10-01 at 12.59.18 PMPreviously available in Europe and Canada, the Freestyle Libre Flash Glucose Monitoring System was approved by the FDA last week.

From the press release:

The system reduces the need for fingerstick testing by using a small sensor wire inserted below the skin’s surface that continuously measures and monitors glucose levels. Users can determine glucose levels by waving a dedicated, mobile reader above the sensor wire to determine if glucose levels are too high (hyperglycemia) or too low (hypoglycemia), and how glucose levels are changing. It is intended for use in people 18 years of age and older with diabetes; after a 12-hour start-up period, it can be worn for up to 10 days.

You can read the full release here.

What distinguishes this system is that is requires no finger stick calibration. Dosing can be made of its blood glucose measurements. To get a reading, the user waves the handheld reader over the sensor worn on the body that has a wire inserted under the skin. The reader reports bg levels as well as directional arrows and an 8 hour trend history.

The Libre Pro version was previously available in the US, but that allowed for medical professionals only to access the data. The Libre Flash now gives the user full access to information and its immediate use.

For more:

Diabetesmine.com

A Sweet Life

Fiasp Receives FDA Approval

Screen Shot 2017-10-01 at 12.44.06 PMNovo Nordisk released news last week that its faster-acting fast-acting insulin has been approved by the FDA. No need for US citizens to cross the border to Canada to get it anymore!

Here’s an excerpt from the press release:

Fiasp® can be dosed at the beginning of a meal or within 20 minutes after starting a meal. Fiasp® is a new formulation of NovoLog®, in which the addition of niacinamide (vitamin B3) helps to increase the speed of the initial insulin absorption, resulting in an onset of appearance in the blood in approximately 2.5 minutes.2 Fiasp® will be available in a pre-filled delivery device FlexTouch® pen and a 10 mL vial.1

You can read the full release here.

For more on Fiasp, here are some great resources, including Tim Street’s blog, Diabettech.com, where he shares his personal experiences of using Fiasp (along with lots of great posts on OpenAPS and Loop).

Diabetesmine.com

A Sweet Life

Diabettech.com

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Why we chose to #Loop | #WeAreNotWaiting #DIYAP

fullsizeoutput_22433Caleb and I were in the lobby of his dance studio and he started jumping up and down – not for dance but because he has just received an email announcing his acceptance to the Global Leadership program to which he applied. Up until that moment, I was pretty certain I had nothing to worry about, expecting he would not be awarded the scholarship. Not that I don’t have confidence is his abilities, I just assumed it was a competitive program (which it was) and a long shot (apparently not).

As Caleb is celebrating, I really want to be happy for him, but I’m overwhelmed with dread. I’m responsible for Caleb’s care overnight. I prioritize his need to sleep as a growing young man, and take any measures necessary to keep him safe with as little disturbance to his rest as possible. He’s been on sleepovers and overnight field trips, and although he’s gotten through them, they’ve been complicated. We were just in Italy for a family trip last summer and with irregular eating patterns, carb intense meals, and walking seven miles a day, diabetes management worked out reasonably well, but took a lot of extra attention, creative extended boluses, temp basals, and corrections overnight to keep him safe. All of which I did.

Caleb knows what to do in the waking hours of the day, and if he has any questions, I’m usually accessible to trouble-shoot, but overnights and vacations are my responsibility. He’s fourteen – vacation should be a vacation, not extra work and stress. He’s not immune to the anxiety that the variables of traveling bring, I just do my best to soften the burden as much as possible.

I couldn’t grasp how we were going to get him prepared to do it all within the next five months. All I could think of were the overnights – him exhausted after a long, active day, with carbohydrates releasing into his bloodstream willy nilly, an artificial process crudely, manually, and non-scientifically slapping insulin at him, with aftereffects of varying levels of activity unpredictably lowering his blood sugar – to me, it was somewhat horrifying.

I heard it over and over again – “He’ll be fine!” Yes, he’s a bright young man and very responsible about his diabetes – he’s never forgotten to bolus for a meal, for example – but that isn’t useful when you’re in a deep sleep, unresponsive to alarms blaring directly into your ear, and your blood sugar is 70 with a rapid drop alarm. I know the term “dead in bed,” and I can’t ignore it.

My goal for Caleb’s blood sugar on this trip was not optimal care. My goal was no need for emergency intervention: no severe hypoglycemia resulting in unconsciousness and no hypoglycemia resulting in vomiting. Okay, something a little tighter than that, but really, if that’s what it ended up being, it would have been fine. I just wanted Caleb to be safe.

We decided to try Loop because overwhelmingly what I read about a hybrid closed loop system was the safety and assurance it provided overnight and how users were able to sleep like never before.

Simplistically, this is what Loop does:

An app on Caleb’s phone performs a bit of magic. It communicates with his pump through a little computer (see the pic above) via bluetooth. The app connects with Dexcom, assesses his current blood sugar level, the direction of his blood sugar, the amount of carbohydrates he has on board and the amount of insulin he has on board predicts what his future blood sugar will be. Based upon those predictions and the defined target bg range, the Loop app will calculate a need for insulin dosing, either higher, lower or the same and change Caleb’s basal insulin to administer any adjustments. This evaluation is done every five minutes, and his basal is adjusted every five minutes. Caleb does nothing while the app, dexcom and his pump do the work.

If Loop predicts a low blood sugar three or four hours in the future, basal will be reduced or shut off. If Loop predicts a high blood sugar, basal is raised.

We’ve managed Caleb’s blood sugar manually in a similar, albeit much broader way – played with basal to address rising and dropping bgs that weren’t what we expected. We’ve used SuperBolus techniques, again, using basal to deal with the peaks and valleys of certain foods, like breakfast cereal. But what we’ve achieved manually doesn’t compare to what is attained by recalculating future bg and adjusting dosing every five minutes. My hope was that Loop could be the watchdog over Caleb while he slept, when I couldn’t be there, softening out the Dexcom line and keeping him safe.

Traveling to Another Country Alone as a Teen #Loop

fullsizeoutput_22356I wasted no time from the day Caleb learned he was awarded a scholarship to tour Italy for 12 days. He would be traveling with strangers – nineteen other students from all over the country who were also awarded scholarships, as well as the touring company’s staff and chaperones. The clock was counting down and I had a little more than five months to get ready.

This is something for which I never imagined I would need to prepare. For years I had been focused on the event of leaving for college as the ultimate deadline to pass over complete responsibility to Caleb for his diabetes care. This trip accelerated that timeline by four years.

We had already changed insulins and seen the elimination of some erratic results.

Other key strategies employed:

– use of a travel scale

– an increased use and therefore knowledge of carb factors

– use of an instragram account to post pictures of meals and get opinions on carb counts

– using Dexcom G5 CGM, ensuring transmitter was not about to expire and a nice new fresh one was inserted at the beginning of this adventure

– reinstating Nightscout

– teaching Caleb to insert Dexcom by himself

– acquiring a powerful battery charger

– ensuring we had an international data plan, and

– deploying Loop

All of the above were important and useful, but Loop was the most impactful change we made. In response to my call for help, Alicia shared her experiences with OpenAPS and Loop and pointed me in the right direction to find out more. I’d been actively following DIY APS as Dana graciously shared her experiences and knowhow with the world. It all seemed overly technical and complicated, and Caleb wanted nothing to do with tubing, so I remained a spectator up until this point.

Understanding the benefits that a hybrid closed loop system provided, Caleb became open to tubing. Relatively quickly, I was able to secure the supplies I needed and we got started. The learning curve was steep, and we faltered many times. But the payoff was big: a system helping me look over Caleb on another continent even when he slept.

 

 

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