Podcasting with Caleb

IMG_4458.jpgCaleb joined me on the most recent edition of DSMA Live: ‘Rents, only this version wasn’t live. In our first prerecorded show, Caleb and I talk about his diabetes tools and how his role in his care has changed over the nine years with which he’s been living with type 1 diabetes.

I hope you enjoy the show, and thanks for listening!

You can listen here.

 

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OmniPod® Insulin Management System UST400 | User Review

OmniPod® UST400Please see our comprehensive review of the OmniPod UST200 system which still applies to the UST400 system.

Executive summary of our review of the UST400 system: lighter, more discreet, better performance, improved range, minor annoyances of new ID screen and multiple confirm screens. Negligible failure rate.

Digging Deeper:

The smaller Pod is the most noticeable change for us, as users for over six years. Caleb’s reaction was immediate and dramatic. It is lighter and more comfortable. For days he continued to comment about it – less noticeable under his clothes, could barely feel it, and it’s so light. Caleb never ever complained about the former Pod. He doesn’t complain about much when it comes to diabetes, and he’s also not easily impressed by diabetes developments. So for him to go on and on about how awesome the new Pod is, is noteworthy.

Other improvements I like:

  • The range. It is nothing like the increased range that the Dexcom G4 provides, but it is improved. I have found that at times I can be in the hallway while Caleb is in his room sleeping and change a basal rate. In a vehicle, I can deliver a bolus without having to reach back or pass the PDM. Little things like that are a nice plus. It’s not completely reliable though. Particularly if the Pod is on Caleb’s back and he’s facing me thereby creating a barrier between Pod and PDM, connection can be difficult.
  • IOB on the home screen. Easy peasy, always at the ready. I no longer need to continuously do math to figure out what’s left of delivered bolus’. Caleb is also much more aware of IOB since it’s in his face all the time.

That’s pretty much it. Other than that it’s business as usual for us.

Other Observations:

  • I was really looking forward to the new IOB calculation. I thought this would be a significant improvement for us. It’s not. After so many years of dealing with IOB, we’re so aware of it, that the calculation is nothing more than a verification for us.
  • Although the improvements from our perspective are few, the smaller Pod size is a substantial enhancement – much more than I expected. Not only does Caleb find it more comfortable, but we’re getting improved insulin delivery. Caleb is back to changing his Pods every three days rather than every other day. His blood sugars have also been much more consistent – this may or may not be to the new Pod. He’s on a new schedule at school which may have something to do with it, but I think the Pod is a contributing factor.
  • As far as error rate, for several months this was not an issue for us. Over about five months we maybe had two errors.This has changed since the temperature dropped and coats went back on. We seem to be having a static issue. We had this during the first winter of using Omnipod, but not since. After years of going into school for maybe one Pod error a year, I’ve been into school several times in just the past few weeks to change an errored Pod. It seems to be coincident with putting on or taking off a coat. I hope Insulet will figure this out soon like they did with the older Pods.
  • The ID screen is fun – I can change the name to something funny like “Foxy” after Caleb spent a week singing, “What Does The Fox Say”, to give him a chuckle the next time he turns it on. He can do the same – leave me little messages to make me smile. It’s also annoying – especially for night checks. I suppose the increased range increases the risk that the wrong person can get bolused when there are multiple Podders is the room. Since there are none in our proximity, it would be nice to turn it off.
  • The extra confirm screens are also a minor nuisance and even less so than the ID screen, so it’s really not even worth mentioning.

We are very happy with the system. We’ve spoken to Caleb about trying out other pumps. He is not interested. He values the tubelessness of OmniPod over anything else that is available for insulin pumpers today.

Abbott Freestyle and Freestyle Lite Strips Recall

Several weeks ago we went through this:

Screen Shot 2013-11-22 at 10.11.31 AM

Screen Shot 2013-11-22 at 10.35.00 AM

This was after a few other lows – like 30s lows – that we didn’t verify. We just treated, only to see something like 300 pop up a couple hours later.

Three was not our lucky number for a few days.

Caleb has used Freestyle strips since he was diagnosed. We have never had an issue like this with false lows. There is the occasional, unusually high number that warrants a double check before infusing significant doses of insulin, which brings a different result. But we haven’t experienced this false low issue.

We stopped using that particular vial of strips, started testing strips with control solution and haven’t had an issue since. It seems like we might not have been the only ones experiencing this:

Important Urgent Product Recall FreeStyle® andFreeStyle Lite® Test Strips

Please click the above link for full details. Only certain meters are affected.

Lots being recalled are as follows:

Screen Shot 2013-11-22 at 10.21.02 AM

photoI checked all our strips this morning.

The release also states: “A test strip insert is included with every carton of test strips, and provides very important product information. Please read your test strip insert carefully to ensure that you are using the correct Blood Glucose Meter for your test strip type.” 

Freestyle Lite strips are technically not approved for use with the OmniPod controller.

Insulet Investor Call Q1 2013 | New OmniPod

Insulet released Q1 earnings today and held a related investor call. There were statements made that give me the impression there may be a light at the end of the waiting-for-the-new-system tunnel.

The explanation for the delay of deployment for new customers was provided by Duane DeSisto, President, Chief Executive Officer and Director, beginning with the discussion of greater than anticipated interest from new customers resulting in greater demand than original expectations:

“With this significant uptick in demand we did make the decision to delay the transition of existing customers for approximately ninety days in order to build additional OmniPod supply. While the manufacturing process continues to improve we had an unexpected component issue that resulted in lower than planned production in the latter part of Q1. While this component issue was quickly identified and remedied…we determined it most prudent to build inventory to ensure that both manufacturing lines were operating efficiently before we commenced the transition of over 45,000 customers to the new OmniPod. At this point we expect that conversion to start in the next few weeks and we remain confident that nearly all customers will be transitioned by the end of the third quarter.”

Later on in the call when asked: “Do you have inventory levels today to support that transition, or do you think you will have that by the end of the month?” Answer was: “We will have inventory levels here in the next few weeks that we will start converting people.”

Other news:

Lilly Partnership to develop a new OmniPod targeted toward highly insulin resistant people with type 2 diabetes to deliver Humilin U500 insulin. 

As previously disclosed, Insulet has signed a development agreement with an unnamed CGM partner for the development of a sensor to be included in the OmniPod. Human trials are hoped to begin in early 2014. This would be make Insulet the only provider of a system with one product on the body and one handheld device for both insulin pump and CGM.

Listen to the entire call here.

Information is helpful. Thank you for sharing, Insulet. Keep it coming, please.

Read it here.

OmniPod® Insulin Management System | User Review

UPDATE FOR UST400 CAN BE FOUND HERE.

I was asked to give a review of the OmniPod® insulin management system for a Facebook group for parents of children with type 1 diabetes. The group is looking to maintain user reviews for each of the pumps available to help those who are trying to choose one for their child. I am honored to be asked, and happy to oblige.

OmniPod
OmniPod® Insulin Management System UST200

My son, Caleb, is currently 8, was diagnosed shortly before turning 4, and has been using the OmniPod® system for nearly four years.

When we were choosing a pump, the options presented to us were Cozmo, Minimed and Animas. After reviewing each of their features, one did have a stronger appeal than the others, but for the most part I felt that the functionalities of the pumps were all very similar. We just needed to decide which nuances suited our lifestyle and personalities best.

Then a friend told us about a “new” pump – the OmniPod®.  The system includes two parts – the handheld PDM (personal diabetes manager) and the insulin pumping Pod. These two devices communicate with each other wirelessly.

The obvious differentiation is its tubelessness. We love that. Though Caleb is always attached to a Pod, he doesn’t have to carry around a larger device on his person.

  • Caleb can swim and bathe without insulin disruption.  He swims daily and at length during the summer. I don’t have to compensate for missed insulin while he swims.  Although not advised, he’s also enjoyed our hot tub with no adverse effects.
  • Caleb can play sports without insulin disruption and without worry of damaging an expensive device. At the ripe old age of 8, there is yet to be a sport where the Pod has been a concern beyond sliding into a base every once in a while.  Even then, it’s not a big concern.
  • He sleeps without worry or even real awareness that he’s wearing a pump.
  • I can separate the PDM from him.  This is extremely helpful when I’m trying to analyze data, download information, change settings or even just bolus him.  As the manager of his diabetes, it’s nice to not have to try to physically keep up with him to work the mechanics.
  • I like that the separation lets me take a small burden off of him.  If my carrying the PDM gives even the slightest illusion that diabetes is a little less part of “him” while he’s still young, I’m glad to have it.

    Swimming with the Pod
  • To communicate, the Pod and the PDM must be within a couple feet of each other, but it takes less than a second to establish the connection. For example, Caleb checks his blood sugar and administers his bolus at school before lunch in the nurse’s office. Once he hears the “beep beep” that the message of the bolus has been sent, he’s free to go to the cafeteria and leave his PDM with the nurse even while the bolus is still being delivered.
  • He has no worries when going to the bathroom.
  • The tubelessness allows for some discretion. With a Pod hidden under clothing and the PDM appearing cellphonesque, it doesn’t raise too many eyebrows. Discretion is not a major concern of mine, but as Caleb matures, he may feel differently.

Beyond the remoteness…

  • I love, love, love the auto-insertion. I have never inserted any other pump site, so they all may be just as simple, but I love that the whole change process is so easy that Caleb can even do it himself.
  • The integrated meter is great. I love the new ZipWick™ strips too – they need very little blood.
  • I also have great appreciation for the method of bolus delivery.  Bolus’ are delivered somewhat slowly – in .05 increments.  So if I made a mistake and delivered a bolus for an overstated amount (like the wrong number of carbs), you have a chance to cancel it before too much is delivered.  I find that to be a good safety feature.

    Baseball and Podding
  • We were able to acquire a backup PDM when the 2nd generation was released at a relatively low cost.  Should something ever happen to his current PDM, we will only have to start up a new Pod with the backup PDM. There’s no worry about going to shots while we wait for a PDM replacement. We have yet to need the backup though (knock wood).
  • As new generation PDMs are released, upgrading is not an overwhelming financial burden.  When the updated Pods are made available, access to them will be as convenient as getting a new shipment of supplies.

There are two things that I think people considering the OmniPod should keep in mind –

  • You cannot schedule a zero basal rate.  When Caleb first started pumping and had a significant sensitivity to insulin (less than 2U TDD per day), it would have been pretty nifty to be able to program a zero basal at certain times. The smallest basal increment is .05 units and alternating a zero and .05 rate in the wee hours of the morning, for example, would have been nice. We worked around it by setting temporary basal rates of zero and his insulin needs grew rather quickly once he started pumping precluding the need for a zero basal.  Nevertheless, I’ve always felt that would be a good improvement.
  • The IOB calculation (insulin on board) considers corrections only; it assumes that meal bolus’ are needed for carbs consumed. Because we have never known any differently, this has never been an issue. I am able to compensate easily with a little division by 2 or 4. However, I do appreciate that having the option of including meal bolus’ in the IOB calculation could be very valuable, particularly when you have become accustomed to using such a tool in your diabetes management.

Today the options have changed a little, but overall I still feel that all the major players, including OmniPod®, generally have the same functionality. Each has its specific strengths with their own appeal. The bigger decision may be whether to pump or not.  If you’ve decided that pumping is right for you, then it’s just a matter of test driving the various models available to see what bells and whistles you like most.

I believe your mind, heart and perhaps most of all, your gut will steer you correctly. Only you know what’s best for you.

You can read more about our OmniPod® story here.

For an informative post on smaller Pods and DexCom integration, visit DiabetesMine.com.

Insulin Ornaments

We made OmniPod ornaments the year Caleb was diagnosed and began pumping.

OmniPod Ornaments - Christmas 2007

This year, inspired by these and these, we made insulin vial ormanents.

We made one for each Christmas Caleb has had diabetes – each from a different type of insulin…

NPH, Lantus, Diluted Humalog (notes on the back of the year tag to explain each insulin's use).

or in this case, glucagon.

Glucagon

Then we made several more to give to people who support him including his school nurse, his teacher and family members.

For Caleb's Support Team

Happy holidays!

Cliff Scherb | Triathlete and Inspiration

Cliff Scherb - Ironman Arizona - 2008 Photo by Ryan Scherb of Ryan Scherb Photography

This won’t be the first time I say that meeting, talking with and learning the stories of adults living with diabetes provide me great support, hope and inspiration.  The thing – the only thing – that gave me comfort when Caleb was first diagnosed was hearing about anyone leading a normal life with diabetes.  We had just entered a world we knew nothing about and had great uncertainty.  Knowing about anyone managing this disease while achieving their uncompromised goals is what got me through those early days.

Since then I’ve encountered more people than I can count who have continued to inspire me.  Among them are athletes.  Athletes touch me in a special way.  It has everything to do with the difficulty I personally have with keeping Caleb’s blood sugar in range when he swims, plays baseball or just generally runs around outside like the free spirit he is.

The commitment, dedication, planning, determination and tenacity it takes to be an athlete with diabetes is something I cannot completely wrap my brain around.  The enormity of that compared to Caleb going for a swim is too much for me to fully appreciate.

I am in awe of what these athletes accomplish.

I root for my friends Bradford and Gary. I look forward to hearing about their race successes and soak up their blog posts like a sponge. Other heroes: Phil Southerland, Kris Freeman, Jay Cutler, Brandon Morrow and now Cliff Scherb.

Cliff is currently in Hawaii preparing to compete in the Ford Ironman World Championship in Kona – the Ironman of Ironmans.  Cliff holds the Ironman title of second fastest type 1 diabetic with his success in Florida, but hopes to beat the world record for a type 1 diabetic in Kona of 9 hours and 50 minutes.

If you don’t know what an Ironman entails, read this excerpt from the Ford Ironman World Champion site:

How long are the distances in the Ford Ironman World Championship and what are the cutoff times?
The swim is 2.4 miles and the cutoff is 2 hrs. and 20 min., the bike is 112 miles and the cutoff time is 10 hrs and 30 min from the beginning of the race and the run is a full marathon which is 26.2 miles and the cutoff time is 17 hours from the beginning of the race.

I find managing type 1 diabetes through 30 minutes of uncompetetive swimming a complete struggle.  Cliff is undertaking more than 9 hours of swimming, running and biking. Saying it’s remarkable doesn’t seem to give it proper justice; it’s so much more than that.

I first heard about Cliff about a year ago when this local news report aired:

Yep, he’s an OmniPodder. Not that he has to be to get my respect, but since Caleb also uses the OmniPod, it makes Cliff just a little more relatable.  I remember being excited for Cliff then and thinking this report was well done.  Both Cliff and Max Gomez did a nice job explaining type 1 diabetes and how difficult managing it and being a triathlete is. Bravo gentlemen!

I’ve read more about Cliff here.  If you read nothing else of this article, scroll down to the final question and his response. Cliff has an amazing attitude.

So on October 9th we’ll be excited and watching to see if Cliff meets his goal.  You can watch the live stream too – right here.

Cliff is yet another inspiration to help make our own personal journey with type 1 diabetes a little easier.

Thank you Cliff and best of luck!

Bayer, Insulet and Caleb

Should you see a Bayer Diabetes Care pamphlet the next time you visit your endo that looks like this:

Nick's Simple Wins

Open it up and you may find another familiar face:

2009 Contest winners with Nick

Insulet held a conference this week that you can listen to here.  Caleb is mentioned at the end as an example how OmniPod helps improve the way you live with diabetes – in Caleb’s case, by swimming freely.

Caleb in his "backyard".

Diabetes Snapshots. Of Caleb and more.

Day 6 of Diabetes Blog Week.

Diabetes Snapshots

One of those magical moments.
Caleb being Caleb.
4 months worth.
Test strip fun - a younger Caleb.
Filling an OmniPod syringe.
World Diabetes Day
WDD Big Blue Test - brotherly solidarity.
WDD - Lila with blue nails.
Lila emulating Caleb.
These are Caleb's numbers on his 7th birthday.
In the t-ball field with Dad. Always a watchful eye both on the call and on Caleb.
Heading to Yankees stadium. We had a great save on pretzel carbs by the Twitter team. Click to read.
WDD - Hands encircled in blue glow.
Total support - Caleb with father, brother, sister, mother.

Day 1 – A day in the life of…diabetes

Day 2 – Making the low go.

Day 3 – Your biggest supporter.

Day 4 – To carb or not to carb.

Day 5 – Let’s get moving.

Tomorrow’s topic: Dream a little dream.

A day in the life…with diabetes.

Just another day with diabetes.

Thanks to my fellow North-Easterner, Karen, for coming up with the idea of Diabetes Blog Week. I’m excited to be undertaking this week of blog posts with so many who have become my friends over the past year or so.  I’m guessing my RSS reader will explode.  Assuming yours will too, I’m keeping my posts short and sweet.

There’s something extra special about this week’s posts – they will be Caleb’s. This is Caleb… will actually be coming straight from the horse’s mouth.

So here we go.

Day 1 – A day in the life…with diabetes.

How would you describe your days in terms of diabetes?
It’s kindof whacko when you think about it, but I feel normal about it.  When I wake up, I just feel like it’s any other day.  It doesn’t bother me to check my sugar or do the other things I have to do.

It can sometimes make me busy. I check my blood sugar all the time and I sometimes have to take a break from what I’m doing.  Sometimes I feel low and I feel crummy.

How much of your day do you spend thinking about diabetes?
Not much.

What about school?
It’s really busy at school because I have to do a lot of school work and I have keep a routine about my diabetes, like checking with the nurse at 9:30, at lunch-time and before I go home, plus anytime I feel low.

Pod changes?
Changing my Pod can be stressful because it hurts sometimes, but I’m pretty used to it so lots of times it doesn’t hurt too much at all.

Eating?
Why do I have to talk about eating?  Everyone eats.  I have to bolus myself for whatever carbs I eat and Mom writes them down in a journal for school, but I can still eat whatever I want.

I chose the above picture for this post because of the story it tells.  I took it to commemorate Caleb’s first day of baseball.  Upon closer examination, I noticed several reminders of diabetes.  The tiger striped medical ID bracelet, the SPIbelt that holds his DexCom receiver, the open cabinet with his diabetes supplies peeking out, and even the stack of newspapers with the recent article of Caleb and his diabetes.  Just another day.

Day 2’s topic will be: “Making the low go”. See you tomorrow!