Exciting.

My twitter account exploded this afternoon.

People were sharing the news of the FDA approval of  Medtronic’s MiniMed 670G System, the first hybrid closed loop insulin delivery system.

Their shares of JDRF's tweet were accompanied by phrases including:

OMG I may start crying

This might be the best news I've ever heard

I'm over the moon

The exclamation points and happy emojis were innumerable.

I did tweet this, sans even one exclamation point:

 

It is, indeed, big news.  Somehow it's not hitting me, though, as BIG NEWS!!! 

 

I'm generally pretty even-keeled, so to be fair, my twitter feed will never feature countless exclamation points or party-themed emojis.  But I began to wonder what else was feeding my cautious optimism about this news.

 

Perhaps it hasn't sunk in properly yet. Perhaps it's because while approval came faster than some suspected it would, I knew it was on the way so was not completely surprised.  Perhaps it's because while it's a huge advancement, it's not the end goal as far as artificial pancreas products go.  Perhaps I'm considering the insurance environment we're currently in, making me worry that access is a potentially huge issue.  Perhaps I'm wondering how well it actually works. 

 

Don't get me wrong, I'm happy this has happened.  I'm happy that it looks like my kid will be wearing some kind of artificial pancreas system to college.  That's been my hope since it began to seem like a faint possibility. 

 

I'm happy that people will be acquiring these devices and living safer and healthier lives. 

 

I'm particularly happy that this product's approval will pave the way for greater innovation so that eventually my kid will be wearing a system that's mindless and completely foolproof. 

 

For right now, though, I'm just more 'excited' than I am 'EXCITED!!!'

 

 

The Muffin Chronicles: Episode 1

My daughter has taken the same basic lunch to school since first grade:

A sandwich (usually sunflower seed butter and jelly)

Fruit (grapes, berries, a clementine, apple slices)

A salty snack (pretzels, goldfish crackers, sunchips)

This year, she needed a lunchbox addition.  With a 7 a.m. start to her school day because of a period 0 choir class, breakfast and lunch are a long time apart.  The previous lunch wasn't filling her up anymore, even with a larger serving of fruit and a heartier sandwich.

She needed something else nutritious which could be eaten quickly, wouldn't spike her blood sugar, and wouldn't rip out her braces.  The braces part eliminated the obvious granola bar choice, especially when paired with eating quickly.  We tried a couple of brands of soft cereal bars, but there was a definite blood sugar spike just in time for important classes like biology and geometry.  Her lactose issue eliminated cheese or yogurt options.  So we went with:

Corn muffins are her favorite but they're even better with blueberries.

Homemade mini muffins.  It sounds ambitious but hear me out.  If once every couple of weeks I make a batch of mini muffins and freeze them, I can take two out every morning, put them in a little container in her lunch box and she has a decent 20-ish gram snack.  Some recipes are good 'as is,' and for others I substitute whole wheat flour or decrease the sugar to make them a little easier on the blood sugar. 

Corn muffin recipes are plentiful so I won't bore you with that one, but I do plan to share a couple of (hopefully successful) muffin experiments in future editions of 'The Muffin Chronicles' this fall!

Sharing is Caring

Back in October of 2014 I wrote a post entitled,  'Why We're Not in the Cloud.'  My reasoning centered around allowing my daughter to problem-solve her own diabetes issues as independently as possible.  I did not want to be hovering over her metaphorical shoulder, texting ' You're 68- did you go to the nurse?' Or 'Why are you still 250, didn't you correct that yet?'

Fast forward 2 years and we've just received and activated a Dexcom G4 Share receiver and downloaded the app on our phones.

 

Why, one might ask, the change of heart?

1.   My daughter wanted to be able to see her numbers on her phone.  She's a 14 year old high school freshman and that's the kind of stuff they're into. She thought it would be both 'cool' and convenient to be able to use her phone as her primary source of dexcom information.

2. Our family recognized that having a virtual diabetes care team was increasingly important. Gone are the days of a parent, nurse or other diabetes-aware individual being within shouting distance at all times. My daughter is doing more and more of her care and troubleshooting on her own, which is great.  But especially during the transition, it's comforting to know someone else has an eye on her numbers in case problems arise.

3. This one's all about me.  Being able to see her blood sugar on my phone will, I think, give me a little peace of mind when she's traveling on a school bus with the marching band, out late with friends, home alone, or when the school days are followed by long theater rehearsals.  I'm already not sure how I survived the first birthday parties and sleepovers without it.

4.  Because my daughter is busier, we'd rather spend the moments we have together talking about something more interesting than how her blood sugar went all day: was she low in gym, did she spike again after lunch, did the breakfast correction work okay? If there's an issue, then we can get straight to fixing it, otherwise we can talk about other, more interesting, news of the day.

For now the constant stream of information is addictive.  We're entertained, and occasionally alarmed. Only time will tell how this will end up working for us. I look forward to sharing the plusses and minuses in the weeks to come.

JDRF Sneaker Campaign

 

 

My photo of this sign is not as clear as I'd like it to be.  It reads:

 

A cure for Amanda means.... "A cure means no more finger pricks and shots.  I don't have to tell anyone I have type 1 diabetes anymore."

 

Each register at my local Marshalls had a sign like this, featuring a different kid, ranging in ages from 3 to 18, talking about what a cure would mean. 

 

What a great way to personalize the ask. It's eye-catching, with just enough text to read while waiting for the cashier to ring up purchases.  It's effective in explaining why, and for whom, a donation matters.

 

As it happened, I'd already spent several minutes of my Marshalls trip on the phone with my own person who needs a cure. I'd had already promised to purchase a paper sneaker on her behalf so that maybe someday she wouldn't have to call me from school with a blood sugar problem, because those problems would no longer exist. By the time I got to the register I needed no further motivation to put my name on a paper sneaker.

 

For people who don't receive personal phone calls from people with diabetes while they're shopping at Marshalls, I think this is a great addition to the annual sneaker campaign.

 

 

Locked

On the first day of outdoor gym, after running increasingly fast sprints for half an hour, my daughter's blood sugar was low.  She grabbed a friend and went to tell the teacher.  The teacher, apparently a man of few words, pointed to my daughter's friend and said in what my daughter describes as a deep, gruff voice, "You. Take her to the nurse."

So off they went, to the door from which they had exited the building.  Locked.

They tried the 2 other doors on that side of the building.

Locked.

As they debated whether to go back to the gym class (a couple of hundred yards away) or to go to the building's front door which has an intercom system (maybe a bit closer but out of sight of the gym class), someone discovered them trying to get in and opened a door.

Yesterday there was more running outside and, despite an interim round of insulin adjusting, another low. 

"You. Take her to the nurse."

"Is the door unlocked?"

"Go to the front."

They were buzzed in.  Ten minutes later, still in the nurse's office, my daughter heard the bell ring.  She was still wearing her gym clothes and all of her belongings were still in the locker room which, they had been told, was locked when nobody was in it.  The nurse walked her to the gym (her bg was still 60) where the locker room was, indeed, locked. 

As my daughter wondered what her next move should be, the gym teacher of few words appeared . Unlocking the door, he asked,  "You wear a pump?"

"Yes and a dexcom- it's a continuous glucose monitor."

"Does it go to your phone?"  (Wait- what?  Does this guy speak my language, however succinctly?)

"No but my new one will."

"My niece has that."

"Cool.  Thanks for unlocking the door."

Gym blood sugar management may take a while to sort out and there are probably more impeding locks to contend with.  But at least we've learned that the gym teacher of few words gets it.  Even if he's a little brusque about it.

What Time is Gym?

Here's our latest challenge:

The high school has block scheduling.  This means that while kids take 8 classes, they only go to 6 per day.  There is a continuous rotation through A,B,C and D days.  Each day has 3 morning classes and 3 afternoon classes which always remain in their own day parts, but not at the same times. The first challenge is, of course, end up in the right classroom at the right time more often than not. 

Then, to up the degree of difficulty, add diabetes.

This schedule means that gym, like all of the other classes, only takes place 3 out of every 4 days. It's always in the morning, but rotates between 8 a.m. 8:58 a.m. or 9:54 a.m. depending on the day.

Yesterday was the first day the kids changed and had a full gym class. It was during the 8:58 time slot. It turns out, to provide an additional diabetes challenge, that one day per calendar week the class has a 'fitness activity.'  Yesterday's was running sprints outside, promptly followed by the first high school visit to the nurse's office due to low blood sugar.  Other days will be spent on traditional gym units like volleyball and badminton.  This fitness activity day will not occur predictably, so it is not as though we can know that every 'A' day will be different.

Every school year has required an adjustment in the basal insulin delivery rates on my daughter's pump. The summer schedule of waking, sleeping and activity is different from any school schedule.  Each year of elementary and middle school brought a different time for lunch and daily gym class. A couple of weeks into September we were able to see the new patterns and tweak insulin doses to prevent most post-gym or pre-lunch lows.  There were still variables like going outside on a gorgeous spring day to run the track instead of playing badminton; and half days threw everything off.  But generally there was some predictability to the daily schedule and its requisite insulin needs.

This year?  I really have no idea how to proceed.  I dropped the morning basal rates a bit last week after it became clear that being up and active at 6 a.m. was leading to a different pattern than the more civilized summer hours did.  Last night I further lowered, and changed the timing of, the morning basal rates as the first stab at addressing the gym issue.  But I fear that on no-gym days highs will creep in, and that the changes will be more effective on some days than on others due to the range of class times and activity levels. 

In a perfect world, my daughter would check her blood sugar an hour before gym class and then again when class was beginning.  She would know what the day's activity was and use all of the available information to decide whether to set a temporary basal rate or have a snack.  Or we'd have a few different basal patterns set up and change them based on the day's school schedule.  Maybe she would eat different breakfasts depending on when gym was scheduled in order to, theoretically, stabilize her blood sugar at the right times of morning. 

Life as a high school freshman is nothing akin to a perfect world..  At this point she's lucky to make it to the gym at the right time and to find the locker room. Arriving at school for 7 a.m. choir fed, bolused and with enough insulin left in the pump cartridge for the day (oh- and dressed, homework finished and carrying her backpack containing everything she needs for the day) is almost more than we can ask.  So for now at least, we'll play a little bit more with the basal rates to hope we can find a happy medium for the mornings.  And she'll keep the juice boxes close at hand.

First Days of High School

So far high school is overwhelming and scary. Not as much so as we'd conjured up in our imaginations, but it's a big new building with a whole new cast of characters and a whole new set of expectations.

If we make it through tonight's first football game, we might be able to breathe again.

Diabetes has, thus far, not thrown any major curveballs.  A couple of borderline (70ish) lows were treated with glucose tabs in the classroom.  The Dexcom has been alternating between impressive accuracy and short bouts of '???' for a couple of days.  Extreme hunger has been reported at lunchtime and we're searching to find a lunchbox addition which doesn't lead to a major blood sugar spike an hour later, but which isn't 'boring.' 

Most significantly, we've already switched up the school nurse game plan.  When we met in June, we decided my daughter would handle her diabetes independently at school unless she was low or otherwise decided she needed assistance. When I dropped off the supplies before Labor Day, the nurse had qualms about being completely out of the diabetes loop. She wasn't asking for my daughter to visit daily or check her blood sugar in the nurse's office. She just wanted to be able to track how things were going.

I had no objection to her being in the know. Ideally she's part of our diabetes success team. If she notices something we don't (like my daughter is crashing half an hour after every time she has gym) we'd welcome the help.  I just didn't know what the best plan was.  Maybe turning in a log sheet at the end of the week, or downloading the school meter for her? We left it that we'd pass along data in some form by the first Friday of school. 

Leave it to the teenager to come up with the most logical game plan.  'Why don't I just text her every time I check or bolus?'  Of course.  Quick and easy.  No writing things down or remembering to stop by every Friday to hand in a log.  My daughter stopped by the office on the first day of school to say hello and to run this idea past the nurse, who enthusiastically agreed to give it a try.

Much of this week has been about finding the easiest and most efficient way to get through the day: planning the right times to go to the locker, finishing homework (already!) before band practice, the best routes through the hallways. Texting the nurse is another variation on the theme.

A Cautionary Tale

It was Saturday evening at 5:30. My daughter had, as is her custom, waited until the last minute to do a site change.  In less than half an hour she would be leaving to go out to dinner with friends: a gathering to commemorate the end of summer.  Just a quick site change and she would be off.

Supplies were gathered.  The cartridge was filled.  Wipes were applied.  The pump was picked up and buttons were pressed to 'rewind' the area that holds the insulin in order to accommodate the new, full, cartridge.  The motor started to buzz and then...

'BEEP boop BEEP boop.'  It sounded like a very tiny ambulance.  The message on the pump screen read: 'ALARM  CALL SERVICE  No delivery.' There was a code number.

It was then that our lives passed before our eyes.  Diabetes-wise anyway.

Where were the syringes? When was the last time I'd given her an injection?  She had never had to give herself an injection. Would she be able to figure it out in time to go out to dinner? When was the last time I'd written down all of the basal rates, insulin to carb ratios and correction factors?  Probably a year ago.  And where exactly were they anyway?

Without that information we would be challenged to figure out how much lantus to give her if the pump was actually dead.  Then, how would we figure out how much novalog to give for dinner and for meals and corrections to come?  I'd have to call our diabetes clinic and get help.  On Saturday night of a holiday weekend.  And what if a replacement pump couldn't come until Tuesday- after Labor Day?  What if she had to go through her first day of high school on Lantus and Novalog shots? 

My hands were shaking as I dialed the number on the back of the pump.  'For 24 hour technical assistance with your insulin pump system, press 1.'  I pressed 1 and was connected to a new menu including: 'For 24 hour technical assistance with your insulin pump system, press 1.'  I pressed 1 again and was connected to yet another new menu including: 'For 24 hour technical assistance with your insulin pump system, press 1.'  Really? Maybe if I press harder?  The third time was the charm.

The representative I spoke with did not seem panicked or pessimistic.  This was encouraging.  "Have you tried rebooting the pump by removing the battery?"  I had not.  "Let's try that."  My daughter fetched a quarter.  It took longer than usual, with my shaky hands, to use the quarter to unscrew the battery cap, but I did it.  We removed the battery, waited a few seconds, put it back in.  The alarm screen was gone.  I was told to attempt to rewind again, and if that was successful to continue with the whole insulin replacement process while still on the phone with the representative. 

As it began to become clear that things weren't as bad as I had imagined they might be, I said to the representative, "It sounds like this isn't as big a deal as I thought it might be...is this a common call you get?"  She explained that when the pump rewinds it does a series of self-checks and that if it detects a possible abnormality this alarm screen comes up.  Rebooting the pump and rewinding it again causes it to recheck itself and most of the time it does not alarm a second time, meaning (apparently) that the first one was a false alarm.  She did say to call if it happens again, so that they can document it, and that if becomes a regular occurrence they would need to replace the pump. 

In the end, we loaded up the new cartridge and primed the pump with no further problem.  While my daughter finished getting herself ready to go out, I jotted down total daily doses from the pump's history, her basal rates and ratios, and every other number I could think of.  And I set a reminder in my phone to do it again after the next endocrinologist appointment. 

 

So please, pump users, take this as a cautionary tale.  Please (today) make sure you have all your info jotted down or electronically stored somewhere other than your pump, and that you have the equipment and knowledge you need to activate your back-up plan.  Hopefully, like us, you won't need it.  With any luck you won't even be late for dinner.