This is water

We had lots planned for the 4th of July 2012, Cole's baseball game was at 10am, Arden didn't want to miss a 1 pm parade that we go to every year in the next state over and we were joining our family for a picnic and swimming at my in laws. Since the parade is about 35 minutes from our house (and in the same town Kelly's parents reside) Kelly and Arden left the baseball field as soon as Cole's game ended (they won) and I stayed behind with Cole so that he could hang out with his team for a while and then get changed before we left for the picnic.

Cole and I arrived at my in laws' home long enough after the parade had ended that everyone was swimming when we arrived. We walked into the house and made our way to the sliding glass door that leads to the pool. I paused for a moment to speak with someone, during our very brief conversation a gust of wind lifted one of the tall tables next to the pool. The gust, which came literally out of the clear blue, filled the orange umbrella of the table closest to where I stood, lifting it off of the ground. Without hesitation the table and it's contents clumsily tumbled into the pool. I was shocked by the site but not overly concerned as I saw that no one was in it's path either on the sidewalk or in the pool as it fell. At first glance this all seemed like no more then an annoying situation that would need to be cleaned up. Watching all of this through the glass door gave me the sensation of watching television with the sound muted. In an instant Kelly came from stage left entering my field of vision in a full sprint, she didn't slow down as she approached the pool and jumped in with an urgency that caused me to think that someone was pushed in by the heavy glass table. I began to move outside to help when Kelly held up her right hand over her head, she was clutching Arden's D-supply bag. The bag that we keep her OmniPod PDM in. My stomach turned. When I approached the scene, Kelly was handing Arden's PDM to my sister in law, followed by her DexCom CGM, Kelly's Backberry from work and her personal iPhone.

I immediately asked Kelly when Arden's last bolus happened and what her BG was at the time. We were managing Arden's BG completely blind now and without the ability to test, bolus, or suspend basal. Our conversation indicated that Arden's BG was in a good place so instead of ripping her from the picnic to make the trip back to our house, I left to bring new supplies to her. An hour and perhaps twenty or so broken traffic laws later I was back. I switched Arden to a new pod that I'd have to link to an old OmniPod PDM (b&w screen), tested and began monitoring her diabetes 'old school' without the assistance of her DexCom CGM. It was back to timers and worrying between insulin and food. Not good but we'll be fine, the reason I tell you this story isn't because of the drama or shocking nature of loosing so much important and expensive equipment. I tell it because of the book that was on my back seat as I made the desperate drive to and from my house.

During the mad dash to retrieve all of our backup supplies I couldn't help but to think about the book on my back seat. I had a copy of David Foster Wallace's 2005 commencement speech with me because I was going to give it as a gift to a recent graduate later in the day. 'This is Water' is a book that I give to every graduate in my life. It's not really a book actually, but the text of the speech in gift book form. I try to reread the text at least once a year because it's message about choosing how to think about reality is so close to how I try to think about my own life. Wallace makes a compelling argument that every situation can be reacted to in the direction of your choosing. He uses the example of a speeding car and asks you to imagine that the driver may be speeding because their child's life is in the balance. He admits that in most cases the offending driver is probably not in a dire situation but then asks, what if "the Hummer that just cut me off is maybe being driven by a father whose little child is hurt or sick...".

As I sped to my house I had two thoughts. One, the idea that Arden's bolus might drag her BG too low while I was gone and two that I was living a part of Wallace's commencement speech and playing both roles. I was the father driving like a nut and I was the man who choose not to judge him...

Watching two thousand dollars worth of electronics being pulled from a pool was nauseating and it was truly going to cause my family a financial hardship but I never thought about the money. I did my best to keep Arden's health and safety as my only thought or concern. As I took the steps necessary to make that happen I found myself doing what Wallace suggests is possible. I looked at the world, at this situation, in the way that let's me be happy. I remained aware "of what is so real and essential, so hidden in plain sight all around us, that we have to keep reminding ourselves over and over: this is water... this is water". I hope that you take the time to find Wallace's words, they are available in book form, online and the audio of his speech is on YouTube, I've included it below.

Diabetes gives us all plenty of opportunities to see the bad in life and in all fairness and devoid of any new age bullshit, a lot of it really does suck. I just hope that you can trust me when I say that you can choose to not think of it that way, it's difficult but really worth the effort. I've witnessed people like myself who from time to time struggle greatly with the difficult moments that diabetes can present. These moments offer us the very real and easy opportunity to not just see the bad but to lay down in it and make ourselves at home. It's easy for me to say that you should resist that urge but because I know from my own life that choosing to be happy is not the simple task that just saying the phrase suggests... Consider checking out 'This is Water', it helped me to find the right path and I hope it helps you as well.

July fourth 2012 started out in fine form and then quickly deteriorated into a day we'd rather forget. I originally thought that this story was going to end with the image of our gadgets in a bag of rice but diabetes had more in store for us then I imagined. Too much for one blog post, so I'm going to have to wait until my next writing to tell the story of July 5th.

part1

part2

JDRF Announces Research Collaboration with Dexcom, Inc. to Develop

I love the varied ways that the JDRF supports diabetes research. Getting behind a company like DexCom and assisting them with their search for better CGM technology is forward thinking philanthropy. I can't wait to see what great devices are born from this union.

NEW YORK, April 24, 2012 - JDRF, the leading global organization focused on type 1 diabetes (T1D) research, announced today that it has partnered with Dexcom, Inc. (NASDAQ:DXCM), a San Diego, CA-based medical device company focused on developing and marketing continuous glucose monitoring (CGM) systems. The goal of the partnership is to accelerate the development of a novel wireless "smart transmitter" that would allow a CGM system to communicate directly with an artificial pancreas control device currently being used for research studies, instead of only with a CGM receiver. 

JDRF will provide Dexcom up to $500,000 over 12 months in milestone-based funding to complete the development, testing, and manufacturing of a custom "smart transmitter" prototype, which will be used for studies within JDRF's Artificial Pancreas Project academic research consortium.  The direct communication capability enabled by the smart transmitter will be an important feature for artificial pancreas trials in outpatient (real-world) settings, as it would eliminate the need for a trial participant to carry multiple devices all wired together while testing an artificial pancreas system's ability to manage glucose levels. 

People with T1D are burdened with constantly having to determine the right amount of insulin to dose at the right time, multiple times every day. Yet even with diligent monitoring, a significant portion of the day is still spent with either high or low blood sugar, placing them at risk for devastating complications. The artificial pancreas under development will be an external device that people with T1D could use to do what their bodies cannot-automatically control their blood sugar around the clock. It will work by combining an insulin pump and a CGM, which provides glucose readings every 1-5 minutes, with sophisticated computer software that allows the two devices to "talk to each other" to determine and provide automatically the right amount of insulin at the right time. Currently, all in-hospital artificial pancreas studies use wires and cables to connect a CGM system and an insulin pump to laptop computers or smartphones, which act as the artificial pancreas controllers.

In current CGM systems, the transmitter sends real-time glucose levels from the sensor to a receiver. In comparison, Dexcom's next generation of "smart transmitters" will have the ability to wirelessly transmit a glucose value directly to multiple devices, including several versions of an artificial pancreas controller.

"This robust wireless capability could greatly enhance the performance of closed-loop algorithms in outpatient studies, and we are proud to be working with JDRF on this exciting venture," said Terrance Gregg, chief executive officer of Dexcom. 

"In order for us to truly achieve real-life outpatient studies of artificial pancreas systems, we need systems that will allow people the freedom and ability to move around while also providing safety, monitoring, and data collection," said Aaron Kowalski, Ph.D., assistant vice president of treatment therapies for JDRF. "Dexcom's 'smart transmitter' will allow the sensor to talk directly to multiple artificial pancreas control devices, and essentially eliminate the hassle of being encumbered by wires and other devices while trying to be active. Now that the first outpatient studies have started, the development of robust wireless connection capability is a key step toward accelerating the delivery of an artificial pancreas to all patients with T1D."

Basal the spike away

Standard Disclaimer: I'm not a doctor, please read the disclaimer at the bottom of the page. Always speak to your doctor, especially before trying something that came to me while I was in the shower. 

Stubborn Highs: Arden's blood glucose can rise and at times be resistant to returning to 'normal'. Happens to all of us. I bolus and wait but nothing, so I bolus again and sometimes again. It's around the second bolus when I begin to wonder, "is the site bad", "maybe the pump has been on too long", "did I grossly miscalculate carbs", a person can go batty trying to decide what has happened. It's likely that before you (or I) can ever come to a conclusion, the BG in question will return to 'normal' or head in the complete opposite direction. Either way, the whole unsightly mess is forgotten becasue you're busy chasing the next problem which leaves you no closer to understanding why this happened or figuring out how to avoid it next time.

Sound familiar? 

This type of BG struggle isn't just associated with stubborn highs: Breakfast or meal time spikes can also lead to an urge to bang your head on a nearby firm surface. Over the last few months I've been experimenting with an idea that came to me in the shower one day and I'm seeing a lot of positive results. I'm going to do my best to explain without being boring or confusing... Please note that what follows will only work for pumpers because it involves manipulating basal rates... sorry MDI and pen users!

Using increased temp basal rates in place of a portion of your bolus

Arden is a really good eater, that is that she eats healthy foods most of the time and in acceptable portions. If the kid has one 'vice' it's that she likes a bowl of Fruit Loops in the morning - just one cup. The BG devastation that this handful of cereal visits unto Arden was, in the past,  terrible. Her BG would rocket to 400 or more after a bowel of the colorful rings. The Loops would seem to laugh in the face of a pre bolus and administering more insulin before the meal or an extra bolus after could not penetrate their sugarific force field. Once I even thought that I saw Toucan Sam give me the finger as I put the cereal box back in the pantry.

I hate this song and dance. I hate that Arden can't have a flippin' bowl of cereal once and a while and I double hate the feeling that I live with when she eats cereal and her BG goes crazy. Foods like this don't just send her BG too high, they ruin most of the rest of her day. I'm full aware that cereal isn't a good choice for my diabetic daughter but I'm not writing about that today. Today I am talking about how, with the help of an insulin pump, we can all fight meal time spikes associated with not so great food choices and manipulate stubborn high blood glucose values more easily and smoothly.

My formula

Things you need to know to follow along: 

• Arden's basal rate is .30 in the morning and much of the day.
• For a serving of Fruit Loops she requires 2 units of insulin.
• Giving say 2.5 units for the cereal does not change the trajectory of her BG.
• If I go higher (say 3 units) the spike is not effected enough, topping out at 350 and Arden's BG will plummet between the three and four hour mark.

Time to visit me in the shower where I am apparently about 20 IQ points smarter then I am anywhere else. (I've heard that the hot water on the back of your neck may be the reason why).

I was in the shower one day pondering life and Arden's breakfast BG spikes when I first began putting the pieces together. Overnight Arden's basal rate is .20, if she's high I have to put her basal back to .30 for a bolus to have the desired effect... I wondered what would happen "if I increased the basal beyond .30", could I bring a high BG down in a safer way, steadier perhaps (because she's sleeping) then if I just bolused? I tested my idea at the next opportunity and not only did a significant temp basal bring down the high overnight BG but it did it with less insulin then a bolus would have required and the drop was smoother, it's 'landing' less erratic. My inner mad scientist was intrigued and I had just unknowingly found a big piece to the puzzle that is stopping mealtime spikes.

Proof of concept: Arden sits down and begins eating on a school day at 8:20 am. Today at 7:45 am her bg was 140, I bolused for the first 15 carbs of her upcoming breakfast, which was 1 unit or half of what a serving of Fruit Loops requires. This is a pre-pre bolus, I find that after a long night of no boluses and a decreased basal rate it can take a little longer for insulin to begin working (maybe this is part of the morning insulin resistance many experience?). At 8:10 am I bolused again this time for the remaining 15 carbs but I reduced the 1 unit of insulin by .30 (the equivalent of an hour of Arden's basal rate). Last, I increased her basal by 95% for one hour. (OmniPod won't do 100%), giving the last .30 of the 2 units via an increased basal rate. The temp basal in conjunction with a significant pre bolus seems to be the key to eliminating a BG spike. Pre bolusing alone won't effect a severe spike enough because you can't perfectly sync the insulin peak with the food spike so the BG rises quickly, drops suddenly and often bounces back up. However, when you add a pre bolus to a significant temp basal, the basal acts as a constant drag on the spike and the two together win out.

Breakdown

15 carbs or 1 unit, 40 minutes before breakfast - 7:45am

I can prebolus that far off in this situation without an issue because her basal was .20 all night and she's resistant in the AM, so the insulin is a bit slower to respond first thing in the morning. Plus, with Apidra, Arden rarely experiences significant BG falls so prebolusing this far out feels safe. Additionally, I have 70 points in her BG to play with and the cereal will be releasing sugar into her blood far before she gets too low... (having a DexCom CGM doesn't hurt either).

Another 15 carbs 15 minutes before the meal (withholding the equivalent of an hour's worth of basal)- 8:10

This insulin won't begin working until after Arden begins to eat, so I'm not worried about stacking. Two boluses also mean two insulin peaks while the Fruit Loops are trying to spike her BG. 

Double the basal rate for an hour to complete second 15 carb bolus.

This .30 will work better then if it was given as part of the bolus, why? I don't know, I told you, I'm not a doctor... it just does - Maybe I know this because hot water in the shower makes me smarter. btw, more then an hour of the temp basal is too much and results in a fall in the 3-4 hour range. Doubling for an hour is perfect.

Result: At 9:30 am Arden's nurse called... Arden was 240 by her CGM. The CGM indicated 2 arrows up (which was why she was with the nurse) but the double arrows only lasted for about 4 minutes. So my little science experiment took a double arrow up event that in the past would have sky-rocketed to 400 (or more) and held it to a 4 minute double arrow that never went above 250!

Arden's BG (by the CGM) at 11 am (pre recess) was 145 diagonal down, she drank 2 ounces of juice (7 carbs) and went outside to play. When she returned her BG at 11:30 am (post recess, pre lunch) was 129 by a finger stick, 140 and steady via the CGM. 

I choose and extended bolus for lunch because she was having a bagel. 60% of the 2.20 units at 11:30 am the balance over an hour (to combat the slow breakdown of the bagel). Her BG was 145 three hours later before snack time.

Summation

It goes without saying that what works for Arden won't work for everyone but after months of using this method I am 100% comfortable telling you that what I wrote here is well worth speaking to your endo about. The concept of using a temp basal to complete a bolus holds many possibilities beyond what I wrote about here today. Slow to break down foods and high carb meals for example are also good places to try this method. I'm using a temp basal as part of Arden's bolus on almost a daily basis. It is also invaluable in bringing down stubborn high BGs and getting a BG lower during sleep, avoiding the fear of a sudden drop and without going too low.

I wish you all good health, luck and steady BGs. I'll do my best to answer any question if you have them.

Cured

I remember the two saddest days of my life since Arden's diagnosis very vividly. They came at a very inopportune time. It was six months after Arden's diagnosis which was two months after I fooled myself into thinking that I had mastered type I diabetes. These days began strangely because Arden's blood sugar was eerily steady and a little on the low side. After breakfast her BG got significant low, almost as if she didn't need any insulin. She ate more to stop the BG fall. The food worked but there was no spike at all, which of course was strange. In the moments after I got her BG stabilized I thought, "maybe they were wrong and she doesn't have diabetes".

Having that thought, was the beginning of the longest, saddest two days that I've lived through since Arden's diagnosis. I knew enough about type I to be sure that I was wrong but everything that was happening said that the insulin wasn't necessary and it certainly seemed like she wasn't diabetic anymore. By the end of that day I wasn't giving injections for meals and I had to skip her pre-bedtime Levemir. I didn't sleep much that night, I was waiting up and testing. Waiting because I was sure that her BG was going to suddenly rise - but it never did. It just stayed between 90 and 107 all night.

This trend lasted through the next morning and then I did something that I knew I shouldn't, but had to do. I needed to tell someone that I thought Arden didn't have diabetes. I called my friend Adam who is also Arden's pediatrician. When Adam got on the phone I said something that I still remember to this day, "I'm about to say something that I know is wrong but I have to say it... I need you to set me straight and then I'll get off of the phone". Bewildered he asked me to proceed.

"Arden doesn't have diabetes. She hasn't needed insulin in over a day... is it possible that she was misdiagnosed?"

I knew that she was most likely experiencing a honeymoon period but I needed someone to tell me. With each moment that passed, I was convincing myself a little more that Arden didn't have diabetes. After a long pause Adam said, "no, she was not misdiagnosed, this is a honeymoon period... Arden has diabetes".

I thanked him, there was some awkward silence and then we said goodbye. I went into the bathroom and cried. The remainder of the day was emotionally excruciating, it felt like a cruel combination of every bad day that I had ever lived through.  Later that afternoon we ate dinner and Arden's blood glucose jumped to over 400. I actually felt better when it climbed so far, so fast. 

Today, after so many years of living with type I diabetes, I have seen countless anomalous days. Highs, lows, insulin resistance, sudden drops, more unexpected stuff then I could have ever imagined. I'll never know for sure what happened over those two days. What I can tell you for sure is that it's happened many times since then, including yesterday. Never again to the degree of those days (not needing any insulin) but there have been days when Arden only gets 15% of the insulin that she normally does and her BG never goes above 120.

Last night as we got ready for bed Arden's BG began to jump and then drop, I could see it on her DexCom and finger sticks confirmed what the CGM was saying. Arden's BG was 72 and then 125, then 93 and then 160. It was rolling up and down like a small boat on a very large ocean - this went on all night. The next morning things seemed to be back to normal but sometime around noon they went right back into that tiny boat. Lunch required much less insulin then we thought and then her BG hovered between 70 and 96 all afternoon. Never wanting to waste a day that Arden doesn't need insulin we went to dinner at the Hot Wok Cafe for Chinese. It was there as we looked over the menu that I did something that I've never done before...

I wrote this post to show how something that once seemed so terrible will one day feel very different. Today, we don't blink an eye when Arden doesn't need much insulin for a day or so. We refer to those days and their events with one word, "cured". Now when the cured days come I don't dream of a misdiagnosis or call Adam and I definitely don't go into a bathroom and cry. I just manage them as best that I can and get Arden a nice meal with a ton of carbs.

In my next blog post, I'll tell you how badly our meal at the Hot Wok Cafe went... I may call that post, 'Whisper Down the Lane' or perhaps 'Confusion at the Hot Wok Cafe'.

Inserting a DexCom 7+ Sensor

I thought that your children may benifit from seeing how quick and simple it is to insert a DexCom 7+ sensor. Arden and I made this short video to help a friend feel less anxious about using a Continuous Glucose Monitor for the first time and we decided to share it with everyone.

Once you see how quick the process is, all of your concerns about being able to handle the insertion will melt away. When it was finally time for me to insert Arden's first sensor, I had read and heard so much that I felt like I was preparing to launch the space shuttle. As you are about to see... this isn't quite that difficult. I even slowed down a little bit so you could follow along and still the entire process took less then 20 seconds. Don't blink!

The images below are of Arden's SpiBelt, the belt/case she uses to keep her DexCom receiver around her waist.. Clicking on any of the photos will take you to SpiBelt's page for kid's sizes. 

Update on Friday, February 10, 2012 at 7:07PM by Scott Benner

SpiBelt is not a sponsor of Arden's Day. We purchased Arden's belts at full price. Arden's Day does not accept any ads or do reviews in exchange for payment or products.

Update on Wednesday, October 30, 2013 at 9:50AM by Scott Benner

Arden is now using the DexCom G4 but the steps show here are identical to that of the 7+.