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Category Archives: Insulin Pump Therapy

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!

 

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#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!

Clearing out the Clutter….or How to Maintain Hope in the Midst of all the Hype?

Today, I am spring cleaning…mopping floors, fluffing pillows etc.

And I am feeling the need to clear my head as well. Yesterday, there was a lot of hype on Facebook about a breakthrough for Type 1 that would/could lead to a cure. I had a feeling that it was regarding a news story I heard a week or so ago about islet transplantation. And it was. Great news that progress is being made in improving the ability to transplant islet cells. I am all in favor of research.

But…

transplantation is not a cure. It is like saying that “chemo and radiation are a cure for cancer.” They aren’t. They kill the cancer cells and may or may not prevent you from getting cancer again. A cure would be that cancer, as a disease could be prevented from happening in the first place.

We need to start looking at all the “diabetes news” clutter out there and sorting it into appropriate boxes: management, treatment, cure

  • Management: any new technology for pumps, cgms,ways to deliver insulin (which includes the Artificial Pancreas), meters, test strips including “apps” and software that help with the day to day job of managing the disease

 

  • Treatment: Insulin

yep, that’s it…insulin

Okay, I’ll throw pancreas transplant in here and islet transplant as well

 

  • Cure:

 

 

 

Hmmm,  the Cure box is empty.  Surprise, Surprise (sarcasm intended).

But there are researchers working on a cure.  Dr. Faustman’s study of reversing Type 1 diabetes is promising. or maybe the answer will be  Cardiff University’s Type 1 vaccine.  And there is the gene therapy study being done at the University of Barcelona.  These are just of few of the research projects that are working toward a CURE…not management, not treatment, but at CURE that will eradicate Type 1 and prevent future generations from getting it.

Yes, I love new management products and always want to be one of the first to try them out to help make my daughter’s management of this disease easier UNTIL a cure…not instead of a cure.

And I know that we need lots of options for management, treatment and cures; not every option will work for every person with Type 1.

Whew!  Ok.  One more thing before I get back to my physical spring cleaning.  Find a Type 1 charity that shares your priorities and do everything you can to help the process.  Some of us will have one pet foundation; others will work for as many as physically possible.  Just get out there and take an active part if helping find better management tools, more treatment options and as many potential cures as possible.  We can help by raising awareness about T1.  We can help by talking to our pump/cgm manufacturers and letting them know what will really make daily life better.  We can help by participating in clinical trials. And, I know you don’t want to hear it, but we can help by raising money.   ( Sorry Nike for stealing this but)  “Just Do It”  whatever you can do to help.

Back from the Beach–lessons learned about travel with T1 kid

Down by the lazy river….

Home at last….ahhhhhhh

All and all our trip to the Bahamas went well but not without a few kinks (fortunately, not the insulin pump tube kind!)

First let me say that our local TSA agents were great (after the initial cranky one who quickly passed us off to her higher-ups).  Our hometown is a friendly one and so were our TSA agents. I explained that KC couldn’t go through the body scanner due to her insulin pump and cgm (not taking any chances with those babies!) and that I didn’t want her to have to take her shoes off.  According to the agents, children under 12 don’t need to take shoes off anyway. In order for us to opt out of the scanner (no wands available at our airport) and proceed to pat down, the supervisor needed to be called .  It was 4:30 am (6 am flight) and the agents were a little gleeful to have to wake up their usually grumpy boss!  We were quickly told that he waived the need for the pat down. All she would need would be an examination of the residue on her hands after touching her pump and checking the residue on her shoes.   They hand checked our insulated bag with insulin and let us through with snacks, juice boxes etc. They all profusely apologized for our wait–to which I repeated “that’s why we got here early!”    One agent thanked me for having done my research and knowing exactly what procedures would be taking place.  I offered my documents (doctor’s letter, Medtronic info, TSA letter) but didn’t need to pull them out of my bag.  The rest of the trip went smoothly as did entry into the Bahamas.

KC’s BG numbers were all over the place–as I expected they would be.  We had agreed in advance that she would go without her CGM from the first morning until the last night.  I really missed having that information available but never more so than at lunch on day two.  After her food arrived, KC pulled out her meter only to discover that her strip container was empty.  We were at a restaurant that was a 20 minute walk from our room….

Time to SWAG!  If we’d had her CGM, she could have bolused off her sensor glucose reading….but no such luck!  So we just covered the carbs and figured we’d fix later.  After lunch, the rest of the family went back to the water park and I hustled to the room to get the strips.

I made a decision give her insulin injections by shot for breakfast and lunch on days we would be at the water park.  I wanted to make sure she got all her bolus doses in ….unplugging the pump means some bolus amounts aren’t given.  She plugged back in at meals and received basal insulin during those times. Worked pretty well.

Our difficult times were at night.  She dropped to 48 at 11 pm–thank goodness we were still up.  With no cgm, we wouldn’t have been alerted and she would have slept through it.  She also ran high some nights….so I didn’t get a whole lot of sleep!  Really wish there was a way to temporarily disconnect the cgm like you can the pump.

She had a great time and that is the most important thing.

Our experience with TSA on our return trip was different, but not bad.  I was directed to let the agent at screening know about the T1…before I could say anything to her, she spotted our water bottle and told me it wasn’t allowed into the gate.  As soon as I mentioned type 1 diabetes, the bottle was put back in our bag. KC got a mild pat down.  I was waiting for my shoes and didn’t have the chance to ask them not to take hers off (she’s 5 ‘7 1/2″  and doesn’t look 12).  This time they just looked at her feet. No residue check on hands or pump.  Also, these agents didn’t open the insulin bag.

Final note: didn’t use the Aquapac but did keep the pump in the Pelican case when KC wasn’t wearing it.

So my advice is:  be prepared, be firm, but be pleasant.  The agents treated us well both at home and in the Bahamas.  Still sad that airline travel has changed so much, but a good attitude and doing your research will make it easier for all!

Beach Bound with a Pumper: what’s a mother to do?

Posted on

We have the opportunity to go to the Bahamas this summer. Woo Hoo! Awesome, right? Yes it is….until I start to think about the logistics of taking a kid on an insulin pump there. So my brain is in overdrive, trying to plan for every contingency.

DisneyWorld worked out great last year. How can I make this trip just as easy?

Here’s my plan:

-my husband is traveling a day earlier than the rest of our crew so he will be bringing the suitcases
-the kids and I will each have a backpack; mine will be filled with KC’s diabetic supplies

And then:
-have a letter from her endo stating all her meds, pump, cgm and supplies + medical need for juice boxes and snacks while traveling
-pack instruction manuals for pump/cgm to show TSA
-I plan on asking for “wanding” for KC- or at least no x-ray of pump
-contact airline in advance to ask what else we can do to make this easier

Medtronic has great suggestions on their website:  http://www.medtronicdiabetes.com/customer-support/traveling-with-an-insulin-pump-or-device including a travel card to present to the airlines/TSA regarding insulin pumps and CGM’s.

I also printed out information from TSA and the JDRF website

Okay….that just gets us on the plane and hopefully, through customs….

We will be staying at a resort with lots of water activities including a water park,  “river,” and swimming with dolphins.  Yeah….and we are still using a traditional insulin pump.  Not a tubeless patch pump….as KC reminds me daily that she now wants.

I want her to be able to do everything she wants to do on this trip. So I need to figure out ways to accommodate those wants.  We will only have two and 1/2  days at the resort which is a good thing!

She will be needing a site change on the first full day on the island.  I’ve told her she can go cgm-less that day and the next to do her dolphin swimming etc.  Fear of losing CGM in ocean now set aside.

We are used to taking her pump off for swimming, but what to do about walking on the beach?  I dread the thought of sea water and sand + insulin pump.  I spent some time surfing the DOC and discovered a product called an Aquapac.  It is a waterproof case for insulin pumps that has a place for the tube to come out.  It is not recommended for long term immersion/submersion.  Ours has already arrived and KC is excited about trying it in the shower—great to use when she is running high but needs to bathe! **Please note that the manufacturer states that the insulin flow will be slightly restricted due to the watertight seal.  I know I will feel much better about letting her hang out on the beach with this product.  I’ve also bought a Pelican 1060 waterproof hard case to store the pump when she is disconnected.  I can put the Frio cooling case we took to Orlando in the Pelican to help keep the insulin cool.

We are weeks away from this trip….keep us in your prayers as we plan!

I’ll let you know how it goes!

To Pod or Not to Pod? To sleep or not to sleep?

We participated in our annual JDRF Walk to Cure Diabetes yesterday. A beautiful sunny day with a perfect breeze….couldn’t have asked for better weather! KC and Firefly had a great time leading our team of over 30 walkers.

At the end we headed over to the Vendor booths to visit our Medtronic reps…sadly, they left before the event ended.  But the Omnipod rep was there and caught the eyes of both KC and Firefly.  They each tried on the pods on their arms (a site they never would try with their Minimeds) and were stunned by how easy it was.  KC had said no to the pod in the beginning because she was afraid it was too big and bulky–but now she’s fan….she even wore the sample through a volleyball game, swimming and sleeping…she said she forgot it was there…

So here we go….

To Pod or Not to Pod?

Pros:

  • ease of insertion (both girls filled the reservoir, put the pod on and started the saline themselves)
  • little to no discomfort during insertion
  • reasonable start-up cost ($150 for the start kit)
  • freedom to swim and still get insulin
  • no tubes to get caught on door knobs and drawer pulls
  • no tethered pump to fall out of pocket or off waistband
  • the Artificial Pancreas Project clinical trials are using Omnipods

Cons:

  • uses Dexcom cgm not Medtronic
  • CGM handheld device and Pod/BG handheld not integrated into one unit…must carry both
  • we haven’t finished paying for our Minimed pump yet
  • BG meter is Freestyle –uses different test strips.  We already have Bayer meters and test strips, + One Touch meter and test strips…now a third type?
  • and the biggie….no mySentry type product for Dexcom
  • unknown supply cost

The pros are tremendous. And I am leaning toward letting her use the Pod during the summer months if we get insurance approval.  Checking whether or not it is possible to  use the Medtronic cgm/mySentry without the Medtronic pump  just to keep our nights worryfree (relatively speaking that is)–I think it is possible because the mySentry receives the glucose info from the sensor transmitter….really need to find this out.

I know there are people who say “Just get a baby monitor so you can hear the Dexcom alarms”–well, first off the mySentry is so much more than just an alarm. It provides the glucose reading from the CGM, + information about how much insulin is left, time remaining before sensor change, battery life, and trends.  At any time during the night I can look at it and see the same information that is showing on KC’s pump. And I also find it hard to put a baby monitor in the room of an almost teenager…it seems like an invasion of privacy.  As I say again and again, I want her to live as normal of a life as possible and I shouldn’t have to use a baby monitor.

Why can’t any one pump manufacturer come up with the entire package?  Here’s what we (KC and I) want from a pump system:

  •  a tubeless pump that can get wet
  • and is combined with cgm in ONE UNIT
  • one handheld BG meter/cgm/pump operator device with
  • a remote monitor (with battery back-up)

In this day and age, is this so much to ask for? It’s not like I’m asking for a cure or anything?  Oh year, that’s right, while you are at it let’s get that done ASAP!

UPDATE###The Medtronic Guardian cgm will not work with the mySentry–once again a “brilliant” engineer didn’t think “gee, if we have two cgm systems then we should make both work with the mySentry.”  To clarify, Medtronic has the Guardian cgm which is like the Dexcom in that it has it’s own handheld device for operation and doesn’t speak to the pump; the Paradigm Revel cgm system is operated by and works with/speaks to the pump.

So I guess the decision has been made for us….no podding until a remote monitor/pod (aka patch pump) system is created.

The Great Sleepover Debate

Do you or don’t you? Should I or shouldn’t I? What if?

Tonight is KC’s first slumber party since she went on the pump last May. She hasn’t been invited to one since the week after her pump start. In that case, I chose to let her attend the evening festivities but picked her up before bedtime. And haven’t had to face that question again until this week.

I’ve said yes. I know there are other parents who don’t agree with this decision but we each have to look at our children as individuals not just as CWD. In KC’s favor, she’s extremely conscientious about managing her T1. We had a long talk about my rules for letting her do this, which include the fact that she must text me with her BG at dinner and at bedtime. She knows that if her BG starts to go high and doesn’t respond to correction, then she’ll have to come home early. She knows that she needs to rely on her friends for help and can’t be afraid to ask for it. She knows that she needs to speak up about measuring her milk and her syrup at breakfast.

In a couple of weeks, she will be 12 years old. At 12, I had been babysitting for a year, and was able to make dinner and bake without assistance from my parents. Yes, she is a child with a chronic disease, but she is also a tween who needs to be independent and not forbidden from participating in ordinary activities.

I recently watched MTV’s True Life “I have Diabetes”   I hated it.  (I’ll probably rant more on that in another post) Hated seeing what happens to some CWD when they are no longer under their parents’ supervision. Especially disturbing was the young college student who drinks heavily even though he is causing permanent damage to his body.  I wonder if this isn’t a form of rebellion–just like any teen whose parents are overly strict, T1 or not, who gets a taste of freedom and goes wild.  I don’t want KC to feel like she missed out on being a “normal” kid.  I don’t want her chasing the thrill.  I need to treat her just as I do her non-T1 brother.

Yes, there are special considerations.  Yes, contingency plans need to be made.  Yes, I will worry the entire night.

But

I have made sure she will be in the best possible hands.  Her friend’s dad is a family practice doctor.  I am sending KC with an emergency bag containing everything she could possible need.

We have pre-planned her dinner carbs.  The girls will be going to Ruby Tuesday’s for dinner and we took the time to preview the menu and store carb counts on KC’s phone.

And KC asked if she could take the mySentry with her….she wants it near her so it will wake her up if her pump alarms go off.

I always go back to “what is my purpose as her mother”:  to give her the guidance to learn to make good decisions; to help her grow to be a responsible person so she will be able to live on her own.

In essence, the same purpose as any mother.

T1 is a major part of our lives and we can’t escape it, but it isn’t everything.