Welcome

IMG_5622-002Welcome to my blog, detailing my son Lucas’s journey with type 1 diabetes (T1D), formerly known as juvenile diabetes.  You may want to start at the beginning and read chronologically or catch up with the latest news below.

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Artificial Pancreas

Wow!  Great news, huh?!

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Um…

There is no artificial pancreas (yet).  There is a new insulin pump that has a nifty new feature.  The diabetes community is not very happy with this outrageously misleading news story that’s getting traction worldwide thanks to a savvy marketing person at Medtronic and the FDA’s bewilderingly loose definition of “artificial pancreas.”  Here’s Medscape’s take.

I wrote most recently about our new insulin pump.  A lot of people assume that it does all the hard work of diabetes.  It does not.  It simply delivers insulin in a very efficient way (actually infuses it slowly over a few minutes rather all at once like an injection), and gives us the ability to fine tune dosing in a way shots never could.  But we still have to:

  • Insert an infusion site every 48 hours – this is a small (6mm) teflon cannula embedded under the skin using a needle.  I have tried it, and it’s not painful on my more… er… padded body, but it’s not fun for my lean son, and the insertion device makes a loud sound when triggered.
  • Count every single carbohydrate that passes his lips.  This means we weigh all of his food or make educated guesses that sometimes are wildly off.  If his meal is particularly high fat, we may need to program an extended bolus that delivers some of the insulin now and some later (a percentage and time frame which we are using trial and error to determine) because fat is digested differently by the  body.
  • Add or subtract insulin for decreased or increased physical activity, which sometimes affects his BG up to 12 hours later, requiring a temporary basal (background) rate to be programmed into the pump.
  • Monitor his blood glucose real time with a continuous glucose monitor (aka CGM), which is also embedded under the skin using a needle and actually hurts (we’ve both tried it) so that we know when he’s too low and needs fast-acting sugar or too high and needs more insulin.
  • Take finger prick BG tests at least twice a day to calibrate his CGM and whenever delivering insulin intended to modify his blood sugar (insulin given for carbs is intended to keep it level; when he is too high he’s given additional insulin to lower it, and this requires a fingerstick for confirmation of actual BG level).
  • Give him insulin to treat a high BG (also known as a “correction”) which requires a fingerstick and sometimes a judgement call to modify the dose up or down due to prior physical activity, the composition of his most recent meal, and how much insulin is still active in his body from previous boluses.
  • Fast periodically so that we can ascertain his baseline insulin needs when he’s not eating. (Lucas gets a trickle of insulin around the clock.  He receives a different amount per hour during seven different time segments throughout the day and night.)
  • Replace the pump cartridge, fill it with insulin using a syringe (and sterile technique) every two to three days, and meticulously prime the tubing.
  • Inspect the tubing daily for bubbles or kinks.
  • Analyze the charts and graphs of both devices to determine changes to the pump’s programming.
  • And more which I cannot think of at the moment because I had to get up to do a fingerstick and give insulin at 2 am last night.  My dose was not quite right, OR Lucas rolled over on his Dexcom CGM at 5:30 am so Will also got up to give him juice.  We are zombies.

This list is not meant to garner sympathy but rather to show how much goes into being a substitute pancreas.  Except for the interrupted sleep and the slow process of tweaking the programming, most of the above has become second nature and is a HUGE improvement in all of our lives over MDI, or multiple daily injections (though some people do a great job with MDI and prefer it).

A bionic or artificial pancreas will do all of these things (FYI, the terms bionic and artificial seem to be used interchangeably, though BP typically refers to the project at BU run by Ed Damiano, which I discuss more below).  The scientific consensus is that there are six major steps to be accomplished in order to create an artificial or bionic device that truly does the work of a functioning pancreas.

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The first step is a combined pump and CGM already on the market, also by Medtronic, that shuts off when the CGM senses low blood sugar.  This is known as “threshold suspend.”  We were intrigued by this pump but ultimately rejected it because Medtronic’s CGM technology is widely considered inferior to the Dexcom.  (You may remember in an earlier post I referred to Dexcom’s CGM as the iPod to Medtronic’s Zune…)  We also believe the t:slim pump, created by Tandem, to be a superior pump. (It is the pump that drives the Bionic Pancreas project at BU).

We don’t feel we’re missing out without this technology because we have the super accurate Dexcom monitoring Lucas’s blood sugar, and alarming when he’s low.  We then give him glucose or shut his pump off ourselves.

The pump being heralded in Australia accomplishes step 2 in the above chart.  It shuts off when the paired CGM predicts a low.  Again, we feel this is moot if the CGM is not accurate.  Though it might have saved this poor soul, who died from the dreadfully named “dead-in-bed” syndrome.

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He was wearing a CGM but it was not reporting to him in real time.  It was a retrospective CGM that some patients wear for their doctors to analyze after the fact.  Had he been notified via alarm of the impending low BG by any CGM, Dexcom or otherwise, or had his pump been the step 2 pump that shuts off, he might have survived.  This figure is taken from this article published in the journal Endocrine Practice (Vol 16 No. 2 March/April 2010).

Happily, there is real progress on a bionic pancreas happening right here in Boston. Ed Damiano’s lab at BU has a fully functional step 6 prototype that has been worn for extended periods by both adults and kids.

This is how the BP works:

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You’ll note that it uses TWO insulin pumps, one with insulin and the other with a hormone called glucagon, insulin’s complement, which raises blood glucose.  (Cool side note: the company that created Lucas’s insulin pump, Tandem, is so named because their original vision was a bi-hormonal pump).

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I’ll be honest, though. I don’t want a bionic pancreas for Lucas.  It’s still a machine that will require him to put so much shit on his body, and he’ll still have to insert infusion sites and Dexcom CGM sites like we do now.  And don’t get me started on the cost.

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Mostly, I am wary of the BP because it’s a machine that can and will fail.  Two young adults with Type 1, including the woman pictured above, who were part of a clinical trial last year for the BP, describe their experience with site failures (which we experience every few weeks) and reactions to glucagon in this 8-minute video:

I want a biological cure.

I think it’s achievable (and might be here already if the pro-life camp weren’t so skittish about stem cell research, but that’s another rant).  A biological cure will entail the transplant of pancreatic beta cells, which Doug Melton’s lab at the Harvard Stem Cell Institute has recently cloned from stem cells and coaxed into producing insulin; and halting the immune response that kills them.

If you are interested in learning where we really are on the path to a cure, I encourage you to read the 2014 State of the Cure Report from the Juvenile Diabetes Cure Alliance, with which I am involved.  I will write more about this another time.

Thanks for reading!

Pumped

It’s been a very busy summer in the Bartbach household, and I am just now finding time to write about Lucas’s transition to insulin pump therapy.

First, though, I want to clear up some common misconceptions about the pump. It is not an artificial pancreas. It simply delivers the insulin you tell it to – it’s basically an alternative to shots. Many people I have spoken to assume that Lucas has a device that manages his diabetes for him. Oh, were it so!

This is what his pump looks like.  (He agreed to this picture, but insisted on covering his belly button).  He wears it 24/7, except when showering.

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Here is what is involved.  Every three days I install a new cartridge in the pump. This is a disposable plastic piece with a reservoir for the insulin and a microscopic piston that pumps as little as 1/1000 of a unit of insulin. I use a large syringe to withdraw 200 units or so from the insulin vial and inject it into the cartridge. I attach a fresh length (23 inches) of ultra-thin tubing that carries the insulin from the pump to the infusion site, and painstakingly prime the tubing so that there are no bubbles.

(Wrap your head around that for a minute. A unit of insulin is 1/100 of a milliliter, which is about the size of a small playing die. His pump can dose 1/1000 or .001 of a unit, or .00001 mL!)

Every 48 hours I insert a new cannula – a flexible tube about 6mm long – subcutaneously. This cannula is where the insulin actually enters his body. It’s attached to a little port of sorts, with a sterile septum into which the needle on the end of the tubing is inserted. This is where he detaches from the pump to take a shower or swim.

Every few days I upload the pump data to a website that allows me to analyze, along with our diabetes educator, his insulin dosing alongside the readings from his Dexcom (the continuous glucose monitor embedded in his arm that measures his blood glucose every five minutes) and suggest minor changes to his therapy. If we make changes, our diabetes educator has to fax new orders to school and I need to update the programing on the pump.

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This is grossly simplified, of course, but when you ask me “what’s up” – usually, of late, it’s this. I have only scratched the surface in this post – there is also basal insulin, delivered in a slow trickle around the clock, in addition to the boluses, or large doses, of insulin he receives at meal time.

Oh, and did I mention you are using an automated device to deliver a can’t-live-without-it hormone that can kill you if you overdose? No pressure.

So, yeah, it’s a ton of work. But it’s work for me and Will, not for Lucas, and that makes it all worth it. In addition, it is work that doesn’t have to be done at mealtimes. Prior to going on the pump, each meal involved testing his blood sugar and then using a smartphone app to calculate the insulin dose based on five factors: the grams of carbohydrate in his meal; his current blood sugar; his target blood sugar for that time of day; his insulin sensitivity factor; and his carbohydrate to insulin ratio for that meal. Plus sterilizing a site on his body, priming the needle or syringe, drawing out the proper dose without bubbles, and injecting. Now he just enters the number of carbs he’s eating and his current blood glucose onto the pump’s touchscreen and the pump does all the math based on the aforementioned programming.

Compared to shots, delivering an insulin dose is easy. So easy that he does it himself! (And so easy that he can screw it up, too, which is why an adult always has to supervise his dosing). Below is a picture of him after administering his insulin all by himself in the lobby of the hospital about 10 minutes after our pump appointment. He walked right up to the counter, selected his treat, read aloud to me the number of carbohydrates on the package (my smarty pants boy even knows to calculate the net carbs by subtracting insoluble fiber!) and entered the carbs on the touchscreen (since it was a food-only bolus and not a blood sugar correction, no fingerstick was needed). Glorious. This also means that he can have a snack, or seconds, with the touch of a few buttons.

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Barring a cure for diabetes (or dramatic advances in treatment – the subject of a future post), he will be attached to a device to deliver insulin 24/7 for the rest of his life. That’s a hard thing to make peace with. All of the paraphernalia is quite expensive, too, which means he will always need to have health insurance. But I think his quality of life, not to mention the quality of blood glucose control we have with this precision device, is worth it.

Oh, and I caved. We got a pet. Two actually.  🙂

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Serendipity

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Lucas and his new buddy Anna

My heart is full today.

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Clara Barton

Lucas spent his first day at Barton Day Camp, short for the Clara Barton Center for Diabetes Education in Oxford, MA. The camp is located at the Clara Barton birthplace, about 45 minutes from our house.  (Thanks to the magic of the Internet, I’m simply working from a nearby Starbucks this week rather than from home).

This evening, I spent some time reading about Clara Barton, the founder of the American Red Cross.  Her story is truly inspiring.  What is even more amazing is that Dr. Elliott Joslin, the first doctor to specialize in diabetes, was also born in Oxford, MA, a tiny working-class town south of Worcester.  An amazing confluence of events led to the establishment of the Clara Barton Center:

In 1921, on the 100th anniversary of the birth of Clara Barton, humanitarian and founder of the American Red Cross, the Women’s National Missionary Association of the Universalist Church purchased her home in North Oxford, Massachusetts. The property included a farmhouse, a barn, and 96 acres of land. The home was restored as a museum, and in 1925, a “fresh air camp” for inner-city youths was opened. This humanitarian endeavor was designed to honor Clara Barton, herself a Universalist.

Concurrently, in 1921, insulin was discovered in Canada by Drs. Frederick Banting and Charles Best. While the Universalist Women were building the “camp”, Dr. Elliott P. Joslin (also born in Oxford, MA) became one of the first physicians to use insulin to save the lives of children with diabetes. Children from across the country came to Boston to be treated by Dr. Joslin. Care for children with diabetes became his passion.

In 1932, Dr. Joslin and the Universalist women joined forces to create The Clara Barton Birthplace Camp, an “island of safety” for children with diabetes. The women provided property and funding, while Dr. Joslin became the first medical director of the camp, serving eight girls during the first year. The Clara Barton Birthplace Camp was revered around the world as the first “hospital in the woods” and many smaller programs were modeled after it.

(Source: Wikipedia)

Serendipity also brought Lucas and his new friend Anna (just as sweet as she looks in the picture) together.  I asked a question in a Facebook group about insulin pumps and her mom, Amanda, noticed that I was posting from the next town over, and suggested we meet up before camp.  The kids hit it off.  Our car rides (yep, we’re even carpooling) are filled with giggles.  But every once in awhile one of them asks the other a diabetes-related question.  Lucas wants to know all about Anna’s pump, and Anna wants to know all about Lucas’s Dexcom.

There are two full-time nurses on staff to monitor his blood glucose while he has the time of his life doing traditional camp activities like swimming, arts and crafts, songs and hikes.  At snack time, they all check their BG, count carbs and get their shots together.  And tomorrow’s program includes some diabetes education in the afternoon.  Followed by a movie night and sleepover on Thursday!

Most importantly, Lucas is finding his tribe.  Anna.  Other kids and young adults who know what he is going through.  His counselors, most of whom have T1, too.

As a parent, I can’t explain how meaningful it is to see your child feeling a sense of belonging.  The day ended with a chat with the camp director, Anthony, who showed Lucas his pump (Lucas will be starting pump therapy soon).  I snapped this picture as he asked, “Hey Lucas, do you want to give me my lunchtime bolus tomorrow?”  Wow.  I’ll find out at pickup today if Lucas took him up on the offer.

Thank you, Clara.

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Trendy

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We got our Dexcom last week!  This handy little device has really transformed our family sanity over the last few days.  Let me explain.

Type 1 necessitates multiple blood tests a day.  Our average was about 8 per day – upon waking, with every meal and snack, at bed time, whenever Lucas felt “off” (a few times per day), 15 minutes after treating an “off” feeling to confirm that our treatment (glucose or insulin) was working, and once or twice per night, almost always when we went to bed and about half the time at 2 am.  That’s a lot.

But even with all that data, we still were making educated guesses about his blood glucose between tests.  For instance, if Lucas is at 95 mg/dL (a great number) but dropping (which a fingerstick can’t reveal) and I give him insulin for a meal, he might drop further rather than stay steady.  Or we could give him a thumbs up for a modest snack when he was in the midst of a fast rise and he’ll need more insulin later.  This great little chart from the Dexcom website shows you what I mean:

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Funny thing about diabetes.  You don’t get points for keeping your periodic fingersticks in range.  You get points (OK, not really…) for keeping your blood glucose in range 24/7.  This is very, very difficult to do.  (And I’m told will get much harder as Lucas leaves his honeymoon period, experiences growth spurts, and enters puberty).

Why is blood glucose control so important?  Prolonged hyperglycemia (high blood sugar) results, in the short term, in DKA.  In the long run, it can cause blindness, amputations, heart disease, nerve damage…need I go on?

So bring on the insulin!  Right?  Well, sort of.  If you give even slightly too much insulin, you run the risk of hypoglycemia (low blood sugar), which can come on in an instant and can be fatal if not treated. That’s what all parents of T1 kids fear the most.  Kids with T1 go low almost every day, even with the most attentive management, because food and insulin aren’t the only things that affect blood glucose.  The weather, a growth spurt, illness, physical activity, stress… all of these things impact blood sugar. It’s just impossible to replicate the work a healthy pancreas does.  We just do the best we can.

And there’s “dead in bed” syndrome.  Don’t google it.  It’s rare, but it’s real – a child with T1 is about 8 times more likely to die from hypoglycemia (usually while sleeping) than in a car accident.

Enter Dexcom, which is a CGM, or continuous glucose monitor (and yes, there are other brands of CGMs, but they are the Zune to Dexcom’s iPod).  This thing is so freaking cool I can’t stand it.  Every week I insert a sensor in Lucas’s arm or belly.  It’s a plastic widget surrounded by medical tape, with a tiny 6mm-long cannula the width of a hair in the center.  The applicator includes a needle that punctures the skin and inserts the cannula into a layer of fat.  Into the widget clicks a small transmitter about the size of a Lego.  The whole thing is waterproof and has a permanent battery that lasts about 6 months.

With me so far?

IMG_5247The sensor embedded beneath his skin measures the something something (biochemists, help me here) in his interstitial fluid EVERY FIVE MINUTES. Then the attached transmitter sends this info to a small receiver Lucas carries with him (he has to remain within 20 feet of it, no biggie).

We input his actual blood glucose measurements from fingersticks at least twice per day (fingersticks we were taking for insulin doses anyway), and the algorithm deduces his blood glucose measurement and THE DIRECTION AND SPEED IT’S CHANGING.  Yup.

We’ve already caught a few lows before Lucas has felt them – he usually notices he’s running low at about 50 mg/dL but the Dexcom alerts us at 80, so we can give him some juice before things get out of hand.

IMG_5251Lucas hated the first insertion but seems indifferent to the sensor now (five days in), and he sure enjoys having fewer fingersticks.  Now we only check him to calculate an insulin dose and at bedtime (though I’m sure not every day will be this simple).  Because it’s an estimate, it can’t be used for dosing decisions, but if he’s 150 at 8 pm, and 150 with a horizontal “holding steady” arrow when I go to bed at 11, I can feel safe sleeping through the night, knowing it will beep at me if he suddenly plummets.  The peace of mind has been transformative.

And for the super geeky among us, there’s also CGM in the Cloud – now his Dexcom receiver is hooked up to a data-only cell phone that sends this info to the cloud so we can monitor his BG from afar!  Amazing.

It’s been a good week. 🙂

Grrr

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1. My child has diabetes.  He is not “a diabetic.”

2. He can eat anything as long as he has the insulin to complement the carbohydrates (glucose) in the food.

3. He did not get diabetes because I am overweight.

Control

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Control.

“Wow, that must have been scary.  But it’s all under control now, right?”

As I have learned in the last three months, there is no control.  There is attentive management.  Committed treatment. Diligent care.  But control?  That’s a dream.

This has been a particularly difficult component of this disease for me, because I am a serious control freak type-A personality (thank goodness, Will is not).  When we began, I expected Lucas’s glucose readings to look like this:

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When in actuality, they look like this:

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By the way, those numbers are pretty good for a newly diagnosed T1.  Most of the readings (we take about 10 per day) are between 70 and 180 mg/dL, the goals set by our endocrinologist (for a person without diabetes, a normal fasting blood glucose is under 100).  We are – Lucas is – doing great.  At his recent appointment, his doctor measured his A1c – what percentage of his blood hemoglobin is glycated, or bonded with sugar.  This number reflects the average blood sugar over the last several months.  Lucas’s A1c was 7%, at the upper end of normal for a person with “well-controlled” diabetes.  Of course we will work hard to improve that number but we are thrilled at how well he’s doing.  His A1c at diagnosis was 10% (a non-diabetic person’s is under 5.6%).

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I was going to save today’s news of a bionic pancreas for another post, but in a way it’s connected to this idea of control.  People hear “bionic pancreas” and they envision a simple, closed device (maybe even an implanted device, like a pacemaker) that does its thing and essentially allows the patient to live a normal life.

Those of us whose lives are impacted by T1 are of course very excited about this development.  But it’s important to remember that the bionic pancreas looks like this:

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It’s a breathtaking development, to be sure.  The algorithm that lead researcher and T1 parent Ed Damiano invented is truly revolutionary.  But there are many points of mechanical failure.  For instance, the fine tubes that deliver the insulin and glucagon are known to kink (in fact, as I’ve been researching insulin pumps, I have learned that a kinked line is the most common explanation for high readings that don’t come down, because the insulin is not being delivered effectively).

The only thing that will ever really control blood sugar is a healthy pancreas.  So we are all holding out hope for a biological cure.  I will write more about that another day.

For now, I strive to do the very best I can, to make informed and thoughtful decisions, trust my gut, ask for help when I need it, collect as much data as I can, and:

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