Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dear New Friend (The one whose child was just diagnosed with Type 1 Diabetes),

Your sweet child (no pun intended) was just diagnosed with type 1 diabetes. I know you woke up today in the haze of this whirlwind, and I realize you may wonder if this is actually reality, or some weird dream-like state of consciousness you never knew existed. Whether you are familiar with what type 1 diabetes is or not, you are probably in shock and doing your best to take in the enormity of the situation without panicking.

In the coming hours, days, weeks, and months you will have information thrown at you from a million directions. When you turn to the internet, it’s possible you’ll end up tripping and falling down a rabbit hole you never saw coming. In this age of technology, there are a million people with a million opinions waiting behind every click. Unfortunately, not all of the information at your fingertips will be helpful — or accurate, for that matter.

2015 marks the 10th year since my daughter’s Type 1 diagnosis. She was diagnosed about three weeks after her 2nd birthday, and we’ve stumbled around this block a time or two. From being told to “suck it up” to a suggestion to try feeding her camel’s milk (because I always wanted a pet camel, right?), I’ve heard a lot of stuff on this journey.

With that in mind, I wanted to give you 10 useful tips (in no particular order) to help you figure out how to plant your feet in the right direction:

BUT FIRST!!!!! This is a long post. I mean…it’s been TEN years for us…so TEN tips adds up. I just want to say that if you don’t feel ready to read this right now, that’s okay. Type 1 diabetes is here. It isn’t going away. You can always come back to read this another day.

1) You will, no doubt, deal with a range of emotions as you go through the motions of adjustment…and beyond. I want you to know that it’s okay if you aren’t feeling “happy happy joy joy” every minute. It’s okay to be angry. It’s okay to cry. It’s okay feel frustration over the financial toll, sleep deprivation, and stressful impact type 1 diabetes will have on your family. Pretending any of that doesn’t exist won’t make it go away. Acknowledging the challenges doesn’t mean diabetes “wins”. It means you’re facing reality.

Whenever possible, face it – don’t fake it. Your emotions are validated. Justified. Heard. But you are also the parent, and that means you won’t allow life to fall apart either. You’ll do what needs to be done — even when you’re feeling down — because that’s how you roll.

{Further reading: I wrote this post detailing my emotional journey when we got to the 5 year mark — now we’re standing at the brink of 10 years, and not much has changed.}

2) There isn’t a magic cure. Well-meaning people will offer up all kinds of solutions to try to help your child. I say “well-meaning”, because I’d like to think they aren’t intentionally suggesting you try things that could kill your child. I won’t link to some of the outrageous propaganda here (because I don’t want to give them click stats, and also because I don’t want to send you down the wrong path), but cinnamon won’t cure your child…neither will any special combination of foods…or eliminating a food group altogether…or trying an exotic essential oil…or giving your child a variety of supplements…or trying a specialized exercise program.

Insulin is NOT your child’s enemy. Insulin is a hormone essential for life-sustaining function. Without it, people die. It is the ONLY treatment available for the management of type 1 diabetes. Remember, prior to the discovery of insulin, T1D was a universally fatal disease. No one survived…despite trying every herb, every oil, every diet, every exercise, every everything…everyone died. No one was spared.

Insulin saved your child’s life too.

{Sidenote: You’re child may enter something called a “honeymoon phase” after being diagnosed. For awhile, it might seem like diabetes has disappeared, but it hasn’t. I’m sorry.}

3) There will be no shortage of advice. Once you begin to integrate online, you will find there are as many opinions about every detail as there are details. Remember when you were a new mommy and got sucked into the vaccine debate? Or the breastfeeding debate? Or the cloth vs disposable diaper debate?

Yeah. Like that.

Do you change your lancet with every poke? Did you check ketones with every BG over 250? DO YOU — USE AN ALCOHOL WIPE FOR EVERY INJECTION????? The list is long, and the commentary is longer.

Here’s a tip: Don’t pay attention to any all of it. Do what works for your kid, and let another mother do what works for hers. Take what you find helpful, and leave the rest behind. That’s all there is to it. Pick and choose what (and who) you want to spend your energy on.

Along those lines, be aware that sometimes people will interject themselves into your crisis. And, make no mistake, right now — in the aftermath of your child’s diagnosis — this is a time of crisis as you adapt your new normal. There are some people who are just constantly in a state of drama. They come on strong, act like they know everything — been there/done that, and monopolize your time with their theatrics.  They’ll constantly compare your situation to theirs. They turn every conversation around to be about them, and they never stop to listen. Every day is a new dilemma for many of them, and you’ll grow tired of listening to all of their struggles while trying to balance your own.

You don’t have to make time for all that right now — or ever, for that matter. It’s okay to avoid them. Unfollow. Defriend. Block. Whatever it takes.

Catch your breath.

4) Ask for help. You are going to need someone who can check your child’s BG, count carbs, and help give insulin. You will need someone who can watch your child for an hour or two at some point in time. I know it might feel impossible right now, but be honest when people ask you what you need.

Sure you can always use help with dinners, and errands, and all that good stuff…but for the long haul, you will need someone to be willing to step up in this area. Tell your friends and family you need them to learn everything they can so they can help you take care of your child.

Not everyone will be willing, but someone probably will. You might be surprised who it is.

5) Technology is out there.  When it comes to diabetes technology, there’s a lot of information to absorb. From glucometers to insulin pumps to continuous glucose monitors (CGMs), there’s plenty to learn. While I feel inclined to tell you to cross those bridges when you’re ready, I also feel obligated to let you know that technology has, literally, revolutionized this journey for us.

#1 – The precise micro-dosing offered by the insulin pump helped us stop the horrible low blood sugars that were causing my little 2-year-old daughter to pass out repeatedly. {She wears the Animas PingHERE’S WHY, if you’re interested.}

#2 – Yes, she did begin carrying a cell phone at 9 years old. It was a game changer, and my only regret is we didn’t get one for her sooner. Putting a cell phone in her hand gave us a direct connection for the times we couldn’t be together…like, for example, when she was Toto in the school play and stayed after school twice a week for most of the school year; and that time she went to her 1st sleepover (which didn’t go very well, btw); and all the weekend services we’ve spent apart during church worship. These days, she goes to the park with her pals, rides her bike around the neighborhood, and calls me anytime she’s dealing with a BG issue she feels like she needs help with. I love that we have cell phone technology in this day and age of parenting — and diabetes management.

#3 – Finally, the peace of mind offered by her Dexcom Continuous Glucose Monitor (CGM) is second to none. Dexcom measures the interstitial glucose levels using a very thin sensor placed just beneath the skin. It displays a glucose reading every 5 minutes, along with an arrow to indicate which direction the glucose level is moving. We’ve found it to be incredibly accurate, and would consider it one of the most important tools in our tool box.

Currently, I’m able to remotely monitor my daughter’s Dexcom data using Nightscout. This means I can see her numbers on my laptop, smartphone, and even on my Pebble watch (using an Android app) no matter how far apart we are! Ten years ago, the idea of being able to remotely monitor my daughter’s glucose levels would have been a dream come true…and now here we are. {Nightscout is actually a bit more complicated to set up than I’m making it sound here, but it’s pretty amazing and worth the investment of time.}

If you are a family of iPhone users, the Dexcom SHARE might be a great option for you. There isn’t as much set up required as Nightscout, and you can still remotely monitor your child’s glucose levels. Unfortunately, Dexcom didn’t make their remote monitoring software available to Android users (something I have a pretty big problem with — a soapbox I’ll rant on another day), so I can’t give you a firsthand account of the experience, but I think it’s going pretty well for iPhone users who have been able to use it.

Finally, have hope in the technology of tomorrow. In the summer of 2014, my daughter wore a closed-loop artificial pancreas called the Bionic Pancreas. She wore it for five days as part of a clinical trial, and it completely controlled her glucose levels — like, she didn’t count carbs, she didn’t correct highs, she didn’t deal with lows. It. did. eve.ry.thing. I’m not even making this up, people. I know it sounds very futuristic-scifi-the-stuff-that-movies-are-made-of…but it was real. She really wore it. You can read more about her experience with the Bionic Pancreas HERE.

Oh, and Encapsulation. You need to be excited about that too…it’s a little implanted device that would eliminate the need for insulin for up to 24 months.

Yeah. Read that again: “eliminate the need for insulin for up to 24 months”.

Good stuff is coming.

Get on board with technology.

6) Get involved. You cannot take a passive role in your child’s future. You have a very finite amount of time to shape tomorrow, thereby ultimately making a long-term impact on your child’s destiny.

One day your child will grow up to become an adult with type 1 diabetes. Their ability to carry health insurance, avoid discrimination in the workplace, access technology (as well as what that technology will be), and the ability live as normal a life for as long as possible will come about, because of  advocacy efforts that are happening TODAY.

There are organizations working very hard to secure a better future for your child, but it’s not just about tomorrow. Children today are able to access insulin pumps and CGMs because of advocacy organizations who have worked hard with the FDA and insurance organizations. Our children can go to school with protection under the American with Disabilities Act, complete with a 504 Plan (or IEP, depending on your child’s needs). Today’s children are benefiting because of yesterday’s hard work. It’s a circle effect.

You must become part of the momentum, because we need ALL HANDS ON DECK. Get involved. Start a walk team. Sign up to share your story with lawmakers. Offer to come to the office. DO SOMETHING…but whatever you do, don’t do nothing.

JDRF

ADA

Here’s a great article that highlights some others.

7) There are no bad numbers.  There are a lot of numbers. Many days are like a roller coaster…up, down, up, down…but there are no “bad numbers”. There are high numbers. Low numbers. And target numbers.

Let’s say a BG of 439 pops up on the meter. What do you do?

Frown? Scowl? Grumble?

Does your child think you’re frowning, scowling, and grumbling at them? Are they now worried that they’ve disappointed their parent because of something they have absolutely no control over? Their body doesn’t make insulin. Regardless of whether that number is the result of forgetting to cover something or not calculating correctly, the fact remains that…well…they’re 439 because their body doesn’t make insulin.

Listen…the last thing you want is for your child to tie that number to their self-worth. It’s a number. It’s a piece of data — that’s all. 439 simply means your child needs insulin. Period.

Fix the number, then objectively try to figure where it came from. Don’t lash out. Don’t hurl accusations. Don’t place blame. Just work together to problem solve.

Each number — whether high, low, or target — is merely a point of data on a graph. There are no bad numbers — just data. Use the data to make decisions about what to do next, but do not use the data to place any sort of value on your child.

Your child is so much more than a number.

{By the same token, remember these numbers are not a measure of your parenting either. Data! That is all.}

8) Doctors often don’t get it. You will be surprised how many times you encounter a doctor (or other healthcare professional, nurses included) who will ask you if your child uses insulin. Um, yes. TYPE 1 DIABETES infers the use of insulin, but it’s just not that simple. They will insist your child needs nutritional counseling or start an exercise program to “control their diabetes”. They don’t get it. THEY JUST DON’T GET IT!!!!! And you can educate them until you’re blue in the face, but they will probably just argue with you.

Truthfully, I didn’t really get it either. I was a nurse for 10 years before my daughter was diagnosed, and nothing in nursing school prepared me for this. I was SHOCKED when I learned what this life would consist of. I’m embarrassed to admit this…but I said that…and this patient taught me so much.

I don’t know how to fix the problem at large, but felt you should know so you wouldn’t be caught off guard. Most healthcare professionals have no clue about T1D, so don’t let them start making decisions about your child’s insulin until you’re confident they know what they’re doing.

{Further reading: No one should die because they are misdiagnosed or not diagnosed in time.}

9) Get on a 1st name basis with your school nurse. And your school’s custodian. And the cafeteria workers. And the front office staff. And the crossing guard. And anyone else who is willing to look out for your child during the school day. Love these people. You are on the same team. It takes a village, and they will be there when you aren’t. Everyone matters.

10) Your child was diagnosed, but everyone in the family is living with type 1 diabetes. This is going to be life-changing for everyone. Siblings will go through adjustments. Marriages go through adjustments. Family routines go through adjustments. In some ways, a bomb has just been dropped in the middle of your living room.  In other ways, the ultimate team challenge has just been presented to your family.

Everyone’s experience counts. No one is less important, and there’s most certainly a job for everyone. Youngers can help keep track of juice boxes, and Olders can help learn how to give injections. From learning how to check glucose levels to learning how to count carbs to learning how to weigh and measure food, there’s something for everyone.

All of that being said, sometimes it won’t be so hunky dory. Sometimes siblings grow tired of the extra attention your child with diabetes (CWD) is getting. Sometimes your CWD may grow tired of it too.

After ten years, I wish I could end this post by telling you that it gets easier, but it doesn’t. Sometimes it feels like we’re living life one number at a time, just waiting for the next result so we can make a decision about what happens next.

The insurance hassles, prescription battles, and BG rollercoasters never seem far away. There’s always a challege lurking around the corner. Just when you think you’ve found the perfect insulin dosages, your child grows — or has a test — or exercises — or whatever. There are birthday parties, and sleepovers, and swimming pools, and bounce houses…and nothing is predictable.

It’s never easy…but you will look back and see how far you’ve come…at 2 weeks, then 4…then 3 months, 6…then before you know it, at 1 year, 5…10… You will stand amazed at what you, your child, and your family has overcome. You will look around, simultaneously shocked at how fast the time has flown, and how slow it has crept by at the same time.

No…it doesn’t get any easier.

YOU, my friend, get BETTER!

“I was BIONIC.”

Dec 6 2014

 

Those were her last words as she stepped away from the podium.

We were talking about her experience wearing The Bionic Pancreas for a conference event with our local ADA chapter, and I had to catch my breath before continuing.

Truth be told, I stumbled through the slides, fighting back tears (unsuccessfully, might I add) the entire time.

I can’t help it.

I cry.

Type 1 Diabetes reached inside my chest and squeezed my (candy) heart so hard that nothing but pain, fear, and anxiety could be found running through my veins in the immediate aftermath of her diagnosis. Eventually I got myself on track, but the emotions of the (almost) 10 years since that time continue to range from low to high — practically at the same rate as her glucose levels.

Yes. Sometimes I still cry.

We began our presentation by sharing the camp video recap of The Bionic Pancreas 2013 Summer Camp Study. The video is about 5 minutes long, and I stood off to the side while waiting for it to finish. While standing there, I looked around the room, and realized it was the first time many of the people attending would hear the words “Bionic Pancreas”.

I watched as looks of skepticism turned to interest and faces of exhaustion turned to hope. Fathers inched forward, focusing on every word. Mothers stared at the screen in disbelief. Adults around the room were taking it in, while children and teenagers watched in silent awe. By the end of the video, many tears were falling, and I knew I was in good company.

For the next 40 minutes, we went through our journey to the 2014 Summer Camp Study — from the first time I heard Ed Damiano speak at Friends For Life 2012 to approaching him with my friend, Misty, at the end of 2013. We talked about where diabetes management has been…how Sugar has managed her diabetes with technology…and where it’s all going.

Sugar did a fantastic job. I was nervous that she would freeze in front of the crowd, but speaking about her experience seemed to come naturally for her. She fielded questions with confidence, smiled, and enjoyed the opportunity to share her story.

Thankfully, Sara came to visit for the weekend, and had a clue how to help me stumble through the technological side of things. She had planned to video tape a couple parts, but ended up working behind the scenes, clicking through slides instead. (THANK YOU!!!!) I’m pretty sure I would have cried harder if I had to figure all that stuff out on my own.

Sweet Tink and Tiara sat in the front row, beaming. Without their hard work helping us fundraise, Sugar wouldn’t have made it to camp. Tiara made a little video…check out those mad 8-year-old camera skills…

“I was BIONIC.”

In that moment, my (candy) heart soared.

Bionic: The Data

bionic chalkboard

It was approaching 2:30, and our portion of The 2014 Bionic Pancreas Camp Study was scheduled to end at 3pm. We needed make our way to the building where all 13 girls, and their families, would be meeting with the Bionic Pancreas Team.

Along the way, I took a few moments to grab a quick video clip of Sugar describing her bionic parts before she had to remove the device…

{Sidebar: At first glance, things  might appear too bulky for real world function, but keep in mind this is the trial device. It’s slated to be used throughout the Multi-Center Study (for adults only) that began in June 2014. At the completion of that study, in May 2015, this device will reach the end of its useful life.}

After finishing our little video, she tucked everything away in her bionic belt and we walked inside to find a seat. A group of girls were huddled at one end of the room, and I encouraged her to sit with them, but she shook her head, and sat down beside me instead.

“I want to be next to you when they take it back.”

I could sense her sadness: Sad to be leaving camp. Sad to say good-bye to Ally. Sad to remove her “BioPanky”. Sad that school would be starting within days of our return home…back to life, back to reality…

The team showed us a slideshow of pictures they had taken, made a few announcements, and answered some of our questions (another post, another day – stay tuned!) While Ed Damiano was talking, the rest of the study  team began removing the remaining Bionic Pancreases from around the room.

Dr. Steven Russell had inserted Sugar’s Dexcom sensor and started her blinded CGM on the first day of camp, so it felt fitting that she would hand everything back to him at the end.

steven russell

She smiled as she removed each piece and pulled out her sites. I wasn’t sure what to expect when that moment arrived, but she handled it very gracefully. I, on the other hand, felt a heaviness inside my heart. The previous few hours had provided me with a glimpse into what life could be like with an artificial pancreas…suddenly 2017 felt very far away.

While we waited for our turn to review her data, the nursing staff did some final assessments. In addition to a few other things, she was weighed and measured (again), and they inspected her skin for any signs of breakdown. They were very thorough.

We quickly inserted a new pump site and hooked her back up to her Animas Ping. Dr. Russell met with us privately to look at active insulin on board, leftover from the Bionic Pancreas…and that was it.

One minute she was Bionic. The next it was over. There was some finality in those moments. This experience was really coming to an end, and it was time to start making the journey home.

The Data

I know this is the nitty-gritty everyone is waiting for, but I need to make a disclaimer first:

I did not see any other child’s data, therefore I cannot comment on the girls’ results as a whole. I also cannot reveal my daughter’s subject ID, nor can I share any specific numbers regarding her results until after the study is published. I don’t mean for any of this to sound vague, but I do not want to risk the integrity of the study or do anything that could otherwise delay progress. Thank you for understanding!

The study was divided into two parts: 5 days of blinded CGM monitoring on Usual Care and 5 days of monitoring on the Bionic Pancreas.

Sugar was offered the same amounts of food at the same times of the day, and remained equally physically active throughout the entire camp experience.

Sugar alerted the Bionic Pancreas to administer additional insulin when she was going to eat meals only. She did not alert it to cover snacks.

Hypoglycemia

She did not have any significant episodes of hypoglycemia during the 5 days and nights she wore the Bionic Pancreas. (Hypoglycemia is defined as less than 70.) There was one dip that fell slightly below 70, but she did not require any intervention outside of the normal Bionic Pancreas glucagon function to manage it.

There was a significant amount of hypoglycemia (including a couple days with 2-3 episodes) that required intervention with fast acting glucose during the week she was monitored on usual care. This continued to be the case, despite camp staff’s intervention to her basal rates.

Hyperglycemia

She had one finger stick reading documenting hyperglycemia above 200 while wearing the Bionic Pancreas.

She had six finger stick readings documenting hyperglycemia above 200 while on usual care.

Averages

Her overall average for the 5 days on the Bionic Pancreas fell well within an acceptable target range. Based on those 5 days, her predicted A1c was about 1.5 points lower than her current A1c. (In 9 years, we have never achieved an A1c nearly that low, let alone accomplishing it without significant hypoglycemia).

Her overall average for the 5 days on usual care was also well within an acceptable target range. However, this number included several episodes of both hypo and hyperglycemia. Based on those 5 days, her predicted A1c was consistent with her current A1c.

(A perfect example of how similar averages can result in very different A1c outcomes, eh?)

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

Bionic: The Pick Up

We made the final turn, approaching Clara Barton Camp to pick up our girls, and it felt like we were moving in slow motion. As we moved past the back of their cabin to the parking lot, we were giddy with excitement. Misty and I couldn’t seem to stop the car fast enough! We hopped out and headed straight for their door…wondering along the way if we were supposed to check in somewhere beforehand, but knowing we were on a mission to get our arms around them first and foremost.

We stood at the door for a second.

They were there, smiling with their friends – oblivious to our arrival. I whispered her name at first…then a little louder…

She looked up, met my gaze, and rushed into my arms.

We cried a little. She hugged me tighter than she has in years … and then she told me she didn’t want to go home. She told me she didn’t want to take off her “BioPanky”. She asked if we had to go right away, or if she had some time.

I explained that we had all day. It was just after 10 am and the study didn’t end until 3. With that, she took a breath and then started to pull out all her parts and pieces. “Mom, I can’t wait to show you everything. This is the brain, and this is the insulin.” She was ripping the zippers open and pulling out pumps and tubing like rabbits out of a hat.

She was a very happy camper.

A very happy, grubby camper.

bionic addy (1)

The most glorious, happy, grubby camper I had ever seen.

“I chose Seahawk colors, Mom. Of course, you knew I would, right? Daddy would be so excited about that.”

–Beep Beep–

“Are you beeping, Honey? Do we need to call someone? Should I go get one of the nurses? What do you do when it beeps…”

“Mom.” She grabbed my arm. “Relax. It beeps all the time. I just ignore it. It’s doing what it’s supposed to be doing, so I don’t worry about it.”

Those words have lingered in my mind: “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

The Bionic Pancreas had kept my daughter alive – and thriving – for five days and five nights. It was doing what it was supposed to be doing, and she wasn’t worried about her diabetes.

I don’t know if there has ever been a day in the past nine years that she could say she wasn’t worried about it — or, maybe not “worried” per se — but at least not THINKING about it.

Ignoring it.

Living life apart from it.

And, yet, there she was. Standing right before me, beeping without a care in the world about what her number was.

Her bunk was a mess, so we cleaned up that disaster. I made her change her shirt and brush her hair.

bionic belt (1)

(Once a mother, always I mother, I guess.)

Then it was time for a BG check and lunch.

bionicaction

She didn’t have to count exact carbs, but she did have to tell the device if she wanted a “smaller than usual”, “usual”, or “larger than usual” meal. Those definitions are individualized, and based on predetermined carb ranges the user enters into the device while setting it up. For Sugar, a “larger than usual meal” meant 80-100 carbs.

Off to the dining hall for lunch — she didn’t finish her cookie, but wanted a few more nachos, and then she wasn’t sure about this or that. Honestly, I have no idea how many carbs she actually ate between her excitement and coordinating with Ally to show us some of their camp songs/cheers. She just sat down, clapped her hands, beat the table, and ate a few bites of lunch in between. If she wanted more, she got more. When she was finished with something, she was finished. Neither of us were keeping a carb tally. It all seemed so…

Normal.

After lunch, most of the girls who weren’t in the study were gone. Sugar was trying to catch the few who were left to say good-bye and hug as many friends as she could, before eventually finding her way to the GaGa Pit

bionic gaga

Addy, Ally, and Elise…the final three girls left in the game!

I don’t even know how many games of this GaGa thing she played, but she loved it — as did all the other campers!!! Apparently GaGa is a popular game…who knew?!?!

What I do know, however, is that she played GaGa over and over and over — for about an hour and a half — without ever stopping to think about what her blood sugar was doing.  *AND* she did it after telling a device to give insulin for a “larger than usual” meal, then eating very randomly without really knowing for sure what her carb intake had been. She could have eaten too many or too few carbs, but it didn’t really matter, because the device was plugging along, doing its job…making a decision to give a little insulin, or a little glucagon, or do nothing…every 5 minutes without needing her to interrupt the game to make those decisions herself.

She just played.

And I just watched.

It was the first time since before her 2nd birthday that I witnessed my daughter simply being a healthy, happy child…running and playing carefree…without the burden of diabetes. I tried as hard as I could to savor those moments, because I knew they would be coming to an end. I studied every detail, and breathed in the sense of normalcy that accompanied each passing second. I committed everything to memory…her face was more relaxed; her movement was carefree; her smile brighter. She was experiencing life apart from the numbers — whatever they were — because she didn’t know, nor did she care.

I couldn’t get enough of watching her laughing and smiling and having fun. Nor could I seem to get enough of watching her do those things without the familiar worry in the back of my mind…replaying her previous carb counts and insulin dose/time while wondering if she should stop to check or find a snack.

She was, indeed, BIONIC.

{Stay tuned for the next part of her story. The study officially ends, she removes her “BioPanky”, and we have a chance to sit down with Ed Damiano to review some of her preliminary data.}

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

Bionic: Still Alive!

I’m excited to share more about Sugar’s BIONIC 5 days………….

Except…well…we traveled all day Saturday, and ended up in the Urgent Care on Sunday. My sweet girl came home with a little sniffle and a cough that appears to have morphed into bilateral ear infections. The pain was exacerbated with the help of landing pressure from our two flights, so that was fun. (PS – Thankful she didn’t get sick like this during camp!)

School starts Wednesday. We met all the new teachers this evening (love them!), and our 504 meeting is booked for tomorrow.

Also – laundry.

At the moment, I’m up to my eyeballs in school supplies, but promise I’ll be back with more updates once I get those school lunches packed and all the littles off to their first day of school!

In the meantime, here’s some pictures of my BIONIC girl in action…

pick up

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.
FURTHER READING:

Bionic: But It’s Not a Cure. (And a couple other tough questions.)

e4db5a9fc80e2ba2a7cd353ec2b59ef9 (1)

The Bionic Pancreas clinical trial device. When the technology clears the FDA and comes to market, all three components will be combined into one device. (Also, I can’t help but to notice that beautiful 123 blood glucose on the graph.)

 

The Bionic Pancreas is a closed-loop medical device intended to regulate blood glucose levels using a subcutaneous infusion of insulin (to lower blood sugar) and glucagon (to raise blood sugar). Both insulin and glucagon are hormones produced by the pancreas, and work in partnership with each other to keep glucose levels balanced.

Using a Dexcom continuous glucose monitor and bluetooth technology, a sensor communicates glucose levels with a sophisticated algorithm embedded in an iPhone. With this information, the system then makes a decision to automatically administer insulin or glucagon (or decides not to administer either one) every 5 minutes — that’s 288 times a day!

{I think I can confidently say that I make basal rate and bolus decisions far less than 288 times a day using our current insulin management regimen.}

If you’re thinking to yourself that it sounds awesome, but it’s not a cure — well, you’re right. The Bionic Pancreas is NOT a cure for Type 1 Diabetes. Rather, it is part of the evolution towards the next phase of technology for managing Type 1 Diabetes.

There are still site changes, CGM calibrations, and pump chamber(s) to fill…and, well, that’s far from a cure. Considering that I don’t foresee cure technology arriving before the goal of seeing the Bionic Pancreas to come to market in 2017, I suppose this will just have to suffice while we continue to wait.

It’s taken 50 years for insulin pump technology to evolve from this:

1stinsulinpump

to this:

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(Trivia Tidbit: Did you know that clunky backpack up there used both insulin and glucagon for managing blood glucose levels?)

As a parent who allowed her child to participate in a clinical trial for the Bionic Pancreas, there are two questions I seem to get fairly often, so I’d like to take a moment to answer them now:

1) What if the CGM reading isn’t accurate?

If you’ve used a continuous glucose monitor for any length of time, you’re probably intimately familiar with those random wayward sensor readings.

You know the ones: The ones that scream BG is “HI”, soaring over 400………………………but when you do a finger prick, you find the number is really just barely over 200 (or less).

A device that would automatically give insulin to correct a presumed 400+ BG is downright frightening.

I wouldn’t hook that device up to my child.

I would, however, hook a device to my child that had a proven record of being able to keep BGs inside a target range. So, if a little insulin here and squirt of glucagon there manages to keep the BG from skyrocketing in the first place, that’s a good thing from the onset.

In our experience — and I’m speaking only to *OUR* experience — those wayward readings are typically the result of BG movement too fast in either direction. Avoiding those rapid swings altogether keeps sensor data more accurate.

I realize there are other questions in this area — what if a site falls out? what if you lose a sensor? etc. I’ll share my take, and elaborate more, once I have a chance to review my daughter’s firsthand experience.

2) Doesn’t the use of Glucagon just add another dynamic of concern? Is it really necessary to add another cumbersome component?

The other day I encountered a question that went something like this: “Isn’t using glucagon just being reactionary?” The implication being that glucagon wouldn’t be necessary if low blood sugars were avoided in the first place.

I suppose it could be seen that way…but, considering that the use of both insulin and glucagon is how the human pancreas – more specifically the Islets of Langerhans – is designed to maintain glucose levels, I would have to disagree.

Even in healthy, normal pancreatic function, glucagon is a natural component for balancing insulin to avoid low blood sugars.

In a person with Type 1 Diabetes, insulin production is non-existent and glucagon function is severely impaired (hence the reason for those big red boxes in our emergency hypoglycemia stash).

Therefore, if we’re going to call this an “Artificial Pancreas for glucose control”, I believe it’s necessary to incorporate both components.

Otherwise, as far as I can tell, it’s just “Half an Artificial Pancreas for glucose control” — which could very well prove to be great technology…but it still isn’t mimicking the true pancreatic functions necessary for complete glucose control.

As I noted before, there have been vast improvements in technology as it pertains to insulin, and its administration, over the past 50 years.

On the contrary, there has been very little to no movement in glucagon technology over the past 50 years.

That feels very unbalanced to me.

Using glucagon does require another site, another chamber to fill, another component to deal with…but, *FOR US*, this burden does not outweigh the benefit of providing a safety net for severe hypoglycemia, minimizing low blood sugars, and improving glycemic control overall.

So there’s a few answers to some tough questions I’ve encountered on this journey, but HERE’S MY DISCLAIMER: I’m writing this post based on the research I’ve done up to this point, and without the input of my daughter’s data during her clinical trial experience. My opinions are subject to change at any time once I can get my hands on that information…and because this is my daughter’s quality of life that we’re talking about here, people. Ultimately my opinion will always be that whatever works best for her, works best for me.

PS — If you’re interested in a quick recap about how the trial is going so far, be sure to check out Kerri’s post, where the overall impression appears to be: “It works.”

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.
FURTHER READING:

Bionic: Insulin – July 27, Then and Now

It came to Banting in a dream one night- the Nobel-prize winning idea of how to treat diabetes with insulin. With the help of Charles Best, he finally isolated the compound that has changed the lives of millions of diabetics ever since.

On July 27, 1921, Frederick Banting and Charles Best isolated insulin for the first time.  At that time, Diabetes Mellitus (Type 1 Diabetes) was a universally fatal diagnosis with a mortality rate higher than any malignant disease ever known to man. Prior to the discovery of insulin, the most anyone with this diagnosis could hope for was a slow, miserable death by starvation within one year of diagnosis.

It was a grim picture, to say the least.

In January 1922, it would be a child to receive the first injection of insulin. No one knew for sure what to expect, and there was no way to know the correct dosage. I can’t imagine the crossroads he and his parents must have faced:

Give this injection, which has never before been administered to a human, and death could be immediate.

OR

Don’t give it, and face certain death soon thereafter. 

How horrible it must have been to stand on that corner of fate.

Leonard Thompson survived the injection (though did experience an allergic reaction) and went on to live another 13 years before succumbing to pneumonia, most likely the result of a diabetes complication, at the age of 27.

At some point in history, a child with Type 1 Diabetes had to use a glucometer, wear an insulin pump, and try new insulin compounds. A child has been injected with new needles, new lancets, and has been forced to follow evolving dietary protocols.

Children have, indeed, left their little footprints on the timeline of diabetes history.

I wonder if Frederick Banting could have fathomed the hormone he isolated on July 27, 1921 would be part of a closed loop system being trialed on children 93 years later.

Sugar went BIONIC today. At this point, I don’t have any pictures or video of her countdown to share…but I do know that she is in the most capable hands possible.

For the next five days her blood sugars will be completely controlled by the Bionic Pancreas.

July 27, 2014.

Mark that date in history.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.
FURTHER READING:

BIONIC: 9th Diaversary

On July 25, 2005, I sat in an ICU listening to machines beeping and buzzing while watching my unresponsive baby lying in a hospital crib. Her face was puffy and her eyes were swollen closed. Aside from breathing, she didn’t move very much.

The world hustled in to silence her alarms and prick her toes for blood drops every 30 minutes. They would come around again to draw arterial blood samples or attempt to restart a failed IV. All the while, I sat there, wondering how I would be able to keep her alive without a team of nurses and doctors waiting just outside the door.

She had three IVs in place: 1 for an insulin drip, 1 for a dextrose drip, and an extra for lab draws.

Poke – Beep – Push Buttons.

Insulin up.

Dextrose Down.

Insulin down.

Dextrose up.

And so it continued…poke – beep – push buttons…poke – beep – push buttons…for the better part of 2 days. It was a delicate dance between an IV drip of insulin and an IV drip of glucose.

I will never forget the doctor’s words to me that night:

“This was the last day of your daughter’s life. If you had not gotten help when you did, you would have put her to bed and she would have been gone by morning…”

I don’t remember much else about our conversation after hearing those words. He said the road ahead would be tedious. Frustrating. Exhausting. He told me this race would be a marathon, not a sprint.

He also told me we had won our first victory, simply because she was alive.

We came so close.

On July 25, 2014, my daughter sleeps in a cabin at diabetes camp. There are still people who sneak in during the night to poke her fingertips for drops of blood. Once again, there’s a team of nurses and doctors waiting just outside the door.

Soon, she will trial the Bionic Pancreas: a continuous infusion of insulin and glucagon…and the dance will begin again.

We’ve come a long way in the last nine years. I’m excited to see where the next nine takes us.

BP 1

There is HOPE.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:
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