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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

Rebellion on the Horizon?

Posted on

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 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!

#HAWMC Day 29 Congratulations and a Pat on the Back!

Today’s challenge is to list three things we are great at:

wegoday29

1. researching anything!
2. keeping calm in a crisis!
3. keeping my promises–if I say I’m going to do something, you can count on me!

#HAWMC Day 28 The Best of the DOC Blogs

I find it very hard to determine which Type 1 diabetes blogs are best….because different blogs reach out to different audiences. There are great blogs written by moms of little girls with Type 1 for example, but would the mom of a 17 year old boy find that the most helpful? Probably not. So in the interest of sharing so many of the good resources in the DOC I am linking again to my previous post that categorizes some of my favorite blogs so people can find blogs that fit their particular situation. All have something wonderful to say and are worth checking out…but sometimes a person needs to connect to someone whose journey is more similar!

Navigating the DOC

Here’s a screen shot of the post:

doc1 doc2

#HAWMC Day 24 Wordless Wednesday

wego day 24

pinterest1

#HAWMC Day 23 “I wish this gizmo…”

wego day 23

If I could have the ear of the engineering/marketing people at a major diabetes medical equipment manufacturer, I would let them know what a dream gizmo for the management of diabetes would look like to me.

First, I am tired of “one offs”–some great ideas but they work independently…not integrating or coordinating with any other products on the market.  For example, iBGStar meter…love that you can turn your iPhone into a meter….but why limited to iPhone users only….some of us can’t afford such pricey phones.  Why not create a meter that can be used with any smartphone? And the iBGStar doesn’t talk to any pump.

T1’s and their caregivers need less “stuff” to lug around…

Medtronic users:  pump with tubes (pump is also the device to bolus/set basals etc), cgm w/transmitter, meter that links to pump, lancing device, strips, lancets

Other tube pumps (Animas, T-slim):  pump with tubes, remote to bolus/set basals (which is also the meter for Animas Ping),  lancing device, strips, lancets, additional meter for T Slim (no linking meter)  These pumps currently do not have cgms that are integrated, so cgm with transmitter will also need an additional receiver to carry with you.

Omnipod:  pod pump, pdm which is meter + remote for pump operation,  lancing device, strips, lancets –no current integrated cgm so cgm with transmitter will also need an additional receiver to carry with you.

For those who don’t pump:  insulin vial and syringe or flexpen, bg meter,  lancing device, strips, lancets and maybe a cgm system

No matter which way you manage Type 1, there is a lot of stuff to carry around!  Oh wait, I forgot the glucagon, glucose tabs, juice boxes….ok, you get the point! 385-Who-has-diabetes

So here it is, what I want –The Dream Diabetes Managment Machine

A waterproof tubeless pump

that has accurate cgm and pump contained in the one pod

and insulin and glucagon (oh, Artificial Pancreas we long for your approval)

with the ability to operate pump from any smartphone

and use any smartphone as a bg meter–with test strips of choice

and allows multiple users to be notified by alarm when bg goes high or low (controls to be set by owner)

That sounds about right!

But what I really want is a CURE!

#HAWMC Day 21 Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

Today’s challenge is whether we believe that the quote from Mulan above, is true or false.  My initial reaction was to consider my son and daughter, both of whom face adversity because of their food allergy and Type 1 diabetes, respectively.  But I also began to wonder which flowers bloom the best under adverse conditions.  So I did a quick google search and came up with the Crown of Thorns…..and I thought….wow, here it is a Sunday morning and the symbolism of “crown of thorns’ is even more impactful for its association with Jesus Christ.  And I just finished watching a Rick Steves’ program about Edinburgh that described the St. Giles Cathedral with its ornate spire designed to look like the crown of thorns.  Another example of Baader-Meinhof Phenomenon, which occurs when a person, after having learned some (usually obscure) fact, word, phrase, or other item for the first time, encounters that item again, perhaps several times, shortly after having learned it.  I was just telling another T1 parent about this phenomenon the other day, as an explanation for why we seem to learn of so many other Type 1 diabetics after our own child’s diagnosis.  And I just remembered that my son watched Mulan in 2 classes this week–weird, huh?

So here I am in this surreal loop this morning….and am reminded of when I taught a class on archetypes and symbolism to high school students.  They fought against the concept of symbolism:  “Mrs. C, can’t a tree just be a tree?  How do you know it means anything else?”  And my response would be that if the tree were merely mentioned in passing, then yes, it was just a tree.  But if the writer drew your attention to that tree over and over again, then the tree was symbolic and therefore, had greater meaning.  Today, the “crown of thorns”  appears to have meaning for me.

And yes, I truly believe that survival against adversity makes one more beautiful…makes the victories that much sweeter….

crown of thorns

Have a blessed Sunday!