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Serendipity: KC’s DX Story

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An athletic, active, energetic 10 year old, KC spent the fall playing sports for her school . She started off with volleyball and then went straight into basketball, with some tennis on the side. Autumn in the Southeastern US is still filled with hot days, so KC’s ever-present water bottle didn’t appear unusual. Likewise, I didn’t think anything about the occassional (or so I thought) getting up in the night to go to the bathroom. You drink alot, you pee alot….go figure!

Our family was going through a stressful time due to my dad’s carotid artery surgeries and difficult recovery. By early Dec. we were all exhausted and run down. Both kids annual checkups were scheduled in mid-December but our pediatrician doesn’t allow siblings to have appointments back to back so they were scheduled about a week apart with KC’s appointment set for Dec. 14. One look at my calendar showed a conflict with her basketball game…she hates missing a game, so I called and flipped her appointment with her brother’s scheduled for Dec. 20. And that my friends is where Divine Intervention, serendipity, or Fate –whatever you want to call it–stepped in!

Friday Dec. 17 was the kids’ last day of school before Christmas break. A day filled with parties (i.e. junk food) and sadly for KC, time to say good bye to a beloved teacher who was leaving the school. KC was sobbing at the breakfast table but managed to pull herself together in time to leave for school. She made it through the day and that night my husband, J, and I decided to take her out for Mexican food, which we usually do only when #1 son isn’t with us as his milk allergy is harder to manage in places that serve so many foods covered in cheese. So with #1 son at a movie with a friend, it was KC’s night alone with Mommy and Daddy. She ordered chips and queso dip, plus large glass of milk before dinner. After drinking the milk, she complained of feeling sick. I quickly retorted that all the junk food she ate that day probably was to blame—little did I know. She refused to eat any dinner and begged to be taken home. The next morning she was lethargic–the girl who usually spends her free time dancing or exercising for fun was laying on the couch. Sunday more of the same. We had to drop #1 son off at a dance and decided to take KC to the mall to help pass the time. On the way to the mall, she begged for a drink. “The first thing I want to do at the mall is get a drink….you don’t understand, Mommy, I’m really thirsty…” So off to the food court and she orders a fruit smoothie (ok, knowing she has T1 you can see where this is heading, right?). We pass by the Godiva shop and do something we NEVER do (again, because of #1 son’s milk allergy) we buy her CHOCOLATE! Then on the way out of the mall, she begs for another drink..we hit a vending machine and I’d like to think we got her a water but I believe we bought her a Sprite. We get back to the dance and she is ready to throw up…but can’t….so she drinks tons of water and lays on my lap. In the car on the ride home, she is making smacking noises as she tries to get saliva…”Mommy, really, I HAVE to have something to drink NOW!” J reminds her of her check up scheduled for the next day and tells her to make sure and let the doctor know that she hasn’t been feeling well….

Dec. 20, 2010 after a breakfast of two waffles and a glass of milk (plus the Hershey Kiss she stole on her way out the door) we headed off to her “well-visit.” KC’s biggest fear was the Flu shot that was waiting for her! KC reminded me to tell the doctor about her thirst…and this is where denial comes in–I could not believe that KC could have diabetes because our next-door neighbor (#1 son’s best friend) has T1. It is unbelievable that two kids on the same block could be T1s–what are the odds? Anyway, the doctor came in, did his exam, found KC to be in great health and then asked “is there anything that you are concerned about?” KC’s big blue eyes bored into mine….I heard myself say “well, she’s been really thirsty….but I think she’s coming down with something….”

Dr. L. looks through her files and says “there is some sugar in her urine, but that is normal depending on what she had for breakfast…”

Waffles, syrup, Hershey Kiss….my mind is racing…

“I’d like to do a blood glucose test to double check.”

Okay….

Her BG is 435. Normal is 80-150.

The world stops moving.

As if through a fog filter I hear the doctor…”…juvenile diabetes….let me make a call…”

He leaves. KC cries…she knows what this is. She’s afraid. So am I. I hear Dr. L on the phone outside our exam room. He mentions Dr. N…I know this name. I know his wife. He’s the best ped. endocrinologist in town. I have a friend whose son sees him for another reason. I feel a sense of control return.

Dr. L says get to Children’s Hospital. Do not stop on your way. They are waiting for you. KC is healthy and will be treated as an out-patient.

I have no idea what this entails.

In shock, I get KC to the car. I stand outside and cry. Then I begin the phone calls…my husband, my mother, my son….

And then life changed forever….

I am More….

The world is a all a twitter with news that Miss Idaho wore her insulin pump during the bathing suit competition. And we in the DOC are so proud of her for winning the competition and bringing Type 1 diabetes to the forefront.

But at the same time, it appears the message is lost because of a single photo. And God Bless Sierra Sandison for writing this blog post:  http://missidahoorg.blogspot.com/2014/07/i-am-more-one-of-themost-touching.html

In it,  she explains how thrilled she is to have touched so many, but wants us all to remember that we are so much more than whatever burden we bear in this life.  She has asked people with T1 D to not only #showmeyourpump but also share who you are as a person.

 

So here is my pumper

...show off her insulin pump

…when she started pumping

 

And now….

all grown  up

 

 

Still wearing her pump…sometimes it shows and sometimes it doesn’t.

 

So who is she besides a girl with a pump?

  • a daughter
  • a sister
  • a granddaughter
  • a cousin
  • a loyal friend
  • a singer
  • an actress
  • a musician
  • a volleyball player
  • a tennis player
  • a student
  • a person of Faith

And what has she done since becoming a pumper?

  • Made it to the regional science fair TWICE
  • taken the ACT as a 7th grader
  • led her volleyball team to a tournament championship
  • been named MVP and All League for volleyball
  • played 8 seasons of volleyball
  • attended volleyball and acting camps
  • been student council treasurer
  • sung numerous solos and duets/trios for school and church
  • maintained straight A’s
  • qualified for all honors courses in high school
  • raised thousands of dollars for JDRF
  • seen Luke Bryan, Lee Brice, Cole Swindell, Billy Currington, Kacey Musgraves, Lady Antebellum, and Josh Turner in concert (going to see Jason Aldean and Florida Georgia Line next)
  • met the actress Maddi Trumble, who played Mary Poppins in the National Tour and got to go backstage
  • traveled to Nashville, Walt Disney World, and the Bahamas
  • taken part in a clinical trial of the Artificial Pancreas
  • been Superhero of the month by her local JDRF chapter
  • been part of a story in Insulin Nation
  • volunteered as a counselor at Vacation Bible School
  • raised money for Ovarian Cancer
  • made money as a dogsitter
  •  learned how to sew
  • ….and so much more!

Thank you Sierra Sandison for being more than a person who wears a pump! And cheers to all who are more than they appear to be!

 

The Other Artificial Pancreas….

This past weekend, the American Diabetes Association hosted its 74th Scientific Sessions. Artificial Pancreas technology was the hot topic. Most media attention has focused on researcher Ed Damiano, whose son has T1D, and his “bionic pancreas”. The Bionic Pancreas utilizes both insulin and glucagon to manage glucose levels.

But Damiano was not the only presenter talking about AP technology at the Sessions.

” Two talks within that Saturday symposium, from William Tamborlane, MD, of the Yale School of Medicine, and Boris Kovatchev, PhD, of the Center for Diabetes Technology at the University of Virginia, filled an  overflow room and left dozens camped out in the hallways to watch the proceedings on a small screen.”-

See more at: http://www.ajmc.com/conferences/ada-2014/Sessions-Highlight-Strides-in-Artificial-Pancreas-Technology#sthash.hULwUhnP.dpuf

The UVA AP, like the Damiano project, utilizes the T Slim pump and Dexcom cgm.  The reason being that the T Slim is the only pump currently on the market that can handle the advanced algorithms. (however, I believe that Medtronic is developing its own version of an AP, of which the 530G was the first step).  The primary difference between Damiano’s Bionic pancreas and the UVA artificial pancreas is the use of glucagon by Damiano. UVA uses mini boluses of insulin which increase or decrease constantly in reaction to the glucose readings.

The takeaways from the UVA presentations:

  • closed-loop technology of diabetes being developed at the University of Virginia trimmed the number of hypoglycemic episodes without adverse events
  • today’s Smartphones do the job of running the insulin-regulating algorithms that only computers could do 4 years ago
  • however, due to FDA regulations, the Smartphones have been disabled from phone capabilities.
  • the algorithms, which decide how much insulin to deliver, are ready
  • The technology is almost ready, but needs some fine-tuning. What’s left is putting the devices into clinical settings on a broad basis, which will generate the results that FDA must evaluate before giving approval
  • “at home” studies will be next
The "brains" of the UVA AP are housed in a Smartphone PDM

The “brains” of the UVA AP are housed in a Smartphone PDM.  Anyone approved by the user,with access to a Smartphone, tablet, or computer could monitor remotely.

And UVA presented results from their studies:

University of Virginia results. Abstracts presented Sunday includes results from a study of 10 adults, who stayed at a research “home” that is part of the campus. The study’s aim was to fine-tune insulin delivery overnight, essentially “resetting” the patient to near normal glycemic levels. Dr Brown said the technology aimed for an average 7 am reading of 120 mg/dL, and came in with an average of 119.3 mg/dL, compared with 152.9 mg/dL under standard care. And this happened using lower amounts of insulin, 6.1 units compared with 6.8 units under standard care. According to the study, improved glucose control carried over to the next day.  All done without glucagon.

 

And as for the teen trials that Kate participated in?  I do not have Dr. Danny Chernavvsky’s official results, but they were in line with the adult trials.  Low glucose levels were prevented.

 

To learn more about AP technology, go to http://jdrf.org/research/treat/artificial-pancreas-project/

 

The race is on…and competition is a good thing.  So don’t think Ed Damiano’s bionic pancreas is the only game in town.  There is so much more work being done!

The Artificial Pancreas Project: KC Takes a Place in History

Last week, we took a trip to the Center for Diabetes Technology at the University of Virginia.  KC was one of 4 teens to be part of a clinical trial of the Artificial Pancreas with Remote Monitoring.

The Artificial Pancreas at UVA utilizes mini boluses of insulin to react to changes in glucose levels as detected by the cgm.  Basal insulin in replaced by these micro boluses.  If glucose levels are decreasing, then the amount of insulin will decrease and if glucose levels are increasing, then more insulin will be bolused.

While on the AP, it KC’s drop in glucose levels were managed very well…and the AP compensated for 30 g snack with no bolus.  She started to go high after the 80 g lunch with only 75% bolus.  The two cgms started to lag behind her actual bg and needed to be recalibrated.  After that, she began to safely drop.  The other participant started the trial on the high side, but was brought within range and stayed there all day.  The non-AP participants ran on the high side all day.

Without the AP, and having all the same meals, KC went very high after lunch, breaking the 400 mark and required intervention and correction.

Remote monitoring:  using an Android system, the data will be able to be viewed on any computer, tablet or smartphone.  The graph shows cgm readings, current insulin amounts (similar to basal),  finger stick bg readings, carbs and bolus/correction amounts.  The plan is for alerts to be sent via text to up to five recipients.

KC’s Feedback

Dexcoms:

She wore two Dexcom G4′s for 5 days.  The first insertion hurt more than she was used to on the Medtronic cgm. But the second insertion was painless.  Location of the sites may have been part of the cause.

Initial reaction was that the transmitters were “cool!   They look like iPods.”

Two hours later, she was sick of carrying the transmitters and wished they were integrated into her pump.  She also noticed that she couldn’t scroll back and see her actual glucose readings…only dots on the graph. By the third day, she was routinely forgetting to grab the receivers and take them with her.

She found the transmitters to be more obtrusive than her MM transmitter.  The Dexcom, though it is a bit smaller in length and width, actually has a higher profile and showed through her clothing more than the seashell shaped Medtronic transmitter.  She was much more conscious of the sensors and trying to avoid getting them caught on something.  Due to the placement of the cgms on her abdomen, she also experienced discomfort when trying to sleep on her stomach.  She normally wears her cgm on her rear end, but all participants had to wear the cgms the same way –abdomen.  Had she be able to wear the cgm in the same place she wears her own, she might have found it less obtrusive.

Her overall impression was that she preferred an integrated cgm/pump combination.  The next generation Dexcom (the G5) is expected to be integrated into a smartphone, so one less thing to carry.  The article on this link explains more of what Dexcom has in the works.

The Tandem T-Slim:   Since the Artificial Pancreas software was operating the pump, KC didn’t really get to operate it at all. The only comment she had was that she like the inserter, but couldn’t even tell me what it looked like..teenagers, go figure!

My thoughts:

I know some people freak out about the thought of the pump doing all the work.  Because we already pump and cgm, I do not find it as scary.  Mistakes and mechanical failures do happen…which is why we must be vigilant in checking the equipment and paying attention to alerts/alarms.   When KC’s glucose levels started to rise while on the AP, a finger stick showed that the cgms were off significantly..recalibration quickly fixed the problem.  Do I see the day when absolutely no finger sticks will be needed? No, there always will have to be some sort of backup.

I loved watching the AP prevent her from going low and am excited about that capability. Nighttime lows are the scariest and knowing the pump/cgm will make minute changes to adjust to those readings is amazing!

I appreciated the opportunity to try out the Dexcom G4.  In addition to the issues KC had with the Dex, I did miss our mySentry.  It is more than a glorified baby monitor and tells much more than the Dex receiver.  I love being able to glance at the monitor (no button to push to light it up) and see her glucose level, battery life, amount of insulin left in reservoir, time until calibration etc.  And a simple tap brings up the trend graph.  I also missed the predictive alerts that the Medtronic cgm provides, which are not available on the Dex.  Being alerted that a high or low is predicted to happen helps us prevent those incidents.

Overall, I am still a firm supporter of cgm technology.  MM and Dexcom accuracy was much more comparable that Dexcom users have led me to believe.  The two Dexcoms were often 10 to 20 off from each other and even 50 or more off her finger stick bg.  The doctors running the trial consider within 20 to be accurate, and that is also in line with what we get with the Medtronic. Rise rates, fall rates etc. affect the readings for both MM and Dex.  So other than the insertion of the MM sof sensor, which some people find difficult, the key factor currently is integration vs non-integration.  And I really think it boils down to the user–what works for some, doesn’t work for others.  No cgm is perfect, despite what some users claim, and each has value.

Click on this link to see pictures from the trial:  The Artificial Pancreas Project August 2013

Wicked Awesome!

A shout out to Moira McCarthy and her latest book Raising Teens With Diabetes: A Parent’s Survival Guide.  If you don’t know who Moira is….you need to find out!  She is a d-mama, JDRF advocate, writer, blogger, and the list goes on and on.  I didn’t “meet” Moira until the 2012 World Diabetes Day Postcard exchange connected us.  Cyber mom that I am, I quickly checked her out on Facebook and messaged her.  That was a great day!  I can’t believe it has only been 6 months since that first contact….I feel like I have known her forever!  She is my go-to gal for anything teen parenting related.  She is my touchstone….

As I read the book, I found myself nodding my head, saying “yes, exactly” over and over again.  Her common sense approach to parenting a teen with Type 1 diabetes is so much more than a diabetes book.  Having been a high school teacher, long before becoming a parent, and parenting a teen before my T1 kiddo got there, I can honestly say that her style works for teens in general.  I don’t want to be a spoiler so I won’t say more….buy the book!

And while you are waiting for it to come, check out Moira’s blog Despite Diabetes.  You won’t be disappointed.

Moira McCarthy, you are ‘wicked awesome”!

Rebellion on the Horizon?

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A hot topic on Facebook T1 parenting support groups these days is teens (ages 13 and up) lying about their bg, whether or not they tested, not giving insulin when eating carbs etc.  Got me thinking about my perfectionist, competitive now 13 year old KC.  I cannot see her doing those things…..but other parents assure me they never dreamed their obedient, model T1 would change during the teen years either….yikes!

So I decided to ask KC what she thought about teens not testing, not giving insulin and lying about all of it to their parents.  Her reaction?

 

….

 

(long pause)

 

….

 

(eye brow raised)

 

….

 

 

“That’s stupid…..just plain stupid.”

 

I probed further.  Maybe some teens don’t want to deal with D any more and are trying to deny they have it?

 

“Like not taking insulin is going to make it go away?  That’s the dumbest thing I’ve ever heard!”

 

Well, some teens are just rebellious.

“Why would you do something that is only going to make D worse?”  That is just stupid.  I don’t understand.”

 

You might change your mind when you are 16.

 

“What?  I’m going to become stupid when I turn 16?”  (followed by eye roll of magnificent proportion)

“Like that’s really going to happen!  Stupid, it’s just stupid because it’s stupid.”

 

Okay, folks, I’ve documented it….now to see if she sticks to it!  If not, I have the proof that she said it!

 

Diabetes Blog Week Day 6: Diabetes Art–Faith Hope and Love

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dblogweek

Expressing ourselves and our battle with T1 through art…

Click on the link below to see  a video KC created….

Faith Hope and Love

Diabetes Blog Week Day 5: Freaky Friday

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dblogweek

 

 

I loved the movie “Freaky Friday”..both the Jodie Foster original and the LiLo remake…..what would it be like to change places with someone and really live life in their shoes?  What an opportunity!

Which brings up T\today’s blog prompt:  what  disease you would like to trade for diabetes for one day….

 

Well…..I wouldn’t trade the known for the unknown. That being said, I think I’d like my kids to trade for a day.  Let #1 son see what Type 1 diabetes is like and let T1D daughter see what a day without milk/cheese is like!  Each kid thinks they have it worse….”Yeah, but KC can eat anything she wants, all she has to do is have some insulin….I eat some cheese and I could die!”   “You think it’s fun having to check your bg all day and wear a pump stuck to you…always having to count everything thing you eat?  No insulin and I could die….so there!”

SHAZAM!  Roles are reversed.  How would they react?  What would they think?  #1 son would probably enjoy the ice cream but get sick of my nagging “What’s your bg?   You can only have one serving (to the kid who can eat a quart of So Delicious Soy ice cream in one sitting) and let me measure it for you.”  As for KC…”no you can’t have string cheese, or mac and cheese, or that glass of milk with your cookie.  You want pizza?  Let’ s get you one with extra sauce, no cheese and extra pepperoni!  No we can’t go to Chick Fil A for nuggets and ice cream….both have milk…did you forget?”

 

Hmmmmm….me thinks they might prefer to go back to their old lives!  And maybe understand each other a little better!

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