Thursday, June 20, 2013

100 days! Pump Start

One paper link for each insulin shot left before PumpStart

It's been 100 days since Eleanor was diagnosed with Type 1 diabetes. What better way to celebrate than with Pump Start Up.  We were so excited that we made a paper chain: one link for each shot remaining until the pump, and she tore one off after each insulin injection.  It was a fun tangible way to count down the days and sticks.

I’d heard horror stories about Pump Start up. More than one parent had said it was just as disruptive and world-rocking as diagnosis.  One friend even said, “I wanted to throw the pump out the window those first couple of weeks.”  I remained dubious.  How could it possibly be as bad as diagnosis?  My theory is that most people have a bigger gap between diagnosis and Pump Start up and they’ve simply forgotten just how horrible diagnosis really was (Sounds a lot like childbirth!).  With only 100 days between… trust me… it was NOT as disorienting or overwhelming as diagnosis.  In fact, It’s already brought welcome relief.

We had the distinct advantage of being prepared.  After hearing what folks were telling me, I went out of my way to be sure I knew what I was doing.  In the days since diagnosis, I've read all of the following books:
Eleanor opening up the shipment
from Insulet

Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Type 1 Diabetes In Children, Adolescents and Young Adults by Ragnar Hanas (this book has my favorite definition of LADA ever!)

However, I didn't catch too many Ranger games so far this season. <sigh> I'm sure Nelly Cruz still knows I love him. </sigh>

 For additional preparation, as soon as I heard we had insurance approval,

1. I downloaded the PDF of the Omnipod User Guide, and began reading it from cover to cover. 

2. When the device actually arrived,  I fired it up, made an attempt to  program the settings to match her current MDI basal and bolus doses.  We were able to “fake” bolus without activating a pod, so we did. 

3. We did at least two weeks of “Simul-Bolus” with our Omnipod PDM (with no pod activated) while continuing with MDI.  So, we had lots of practice.  

she's listening to the ticking on Michael's pod as
it delivers a "bolus" of saline.
differing amounts of pink showing in the window is
apparently acceptable.
I guess it worked, we were actually telling the CDE a couple of things at our education session.  (But that’s probably because she’s still getting the hang of the new Omnipod system, since they just switched over at the first of the year - we’ll cut her some slack, while we still take some credit for being prepared).

We spent the weekend with both Michael and her wearing an activated pods full of saline. We did a pod change ourselves on Saturday morning. We did run into one hiccup.  When Eleanor pushed the "start" button, we heard all the clicks, and beeps just the way we were supposed to, and we could see through the window that the cannula was inserted.  By this point between the three of us, this was our 4th saline pod, and we noticed that the pink showing through the window looked different from any practice pod we'd ever done before.  In all the others most of the pink was visible through the window, and in the one we put on Eleanor on Saturday morning only about 1/3 of the pink was showing, so we called Customer Support.  He told us it was probably okay, but since it was full of saline, there wasn't really anyway to tell for sure.  Obviously if it had been a live pod, we'd be able to tell pretty quickly if she was getting insulin or not.  So, we left it as is, and came away from the experience with a little more knowledge, apparently the amount of pink that shows through the window can vary a bit. Now we know.
The saline filled pod… decorated with Niall Horan
and Hello Kitty.  And a bit of face paint on the tape.

We had the fortune of good timing.  (Although, to be honest, it wasn’t good fortune, it was the result of my efforts to get things done when and how I wanted them done.)  Eleanor’s brothers were both at camp all week, so she had us all to herself.  What better way to start up on the pump, than when she had our undivided attention.  That wasn’t part of my plan, but it turned out to be a blessing.  My big goal was to get her going on the pump before we flew out on vacation, and that has worked out as well.  By the time we leave, we should all be comfortable. 

We were all ready with our “bling basket.” She likes to decorate both the Dexcom and the Omnipods as much as possible.

Then the big day was here!  On Tuesday Morning we woke up Eleanor and drove over the Children's Legacy Hospital in Plano.  First they weighed her and took her PDM and Dexcom.

They also did her Hemoglobin A1C - wow.  We must be doing something right, because it was 6.  Woot!!! (For the record, it was 11 at diagnosis) Perhaps our girl is not quite so glycosylated!

Eleanor ate her breakfast at the hospital. She
was ravenous by the time she got to eat it.
Then we went into a room and the CDE quickly checked over the settings.  Then she watched while we deactivated the saline pod, filled the new pod with real life insulin, put it on Eleanor and let her push "start." We had a few tears when she moved down off the table, I assume the cannula shifted position in her arm.  She actually had her arms up over her head when we did the insertion, so I'm sure it pushed further in when she put them down at her sides. (Note: don't do that again) The tears didn't last long.

We stopped on our way out for
a pic next to her favorite color.
And we were off!  We'd packed her breakfast, so we used the PDM to bolus and she sat at the desk in the exam room and ate her breakfast, while we finished up our education.  We went over all the safeguards and instructions.  We passed our quiz with flying colors.  She was happy, we were happy.  We had our marching orders and we were on our way.

There are settings to be adjusted.  She's already had an unacceptable post breakfast spike both days, but we'll get that fixed up in due course.  She had a low before dinner last night and today the CDE made a change to her basal rates to accommodate that.  That's it, we just make lots of notes, do lots of BG tests, and report back to her with our recommendations for changes, and she'll say "yay" or "nay," and that's how we learn to fly on our own.

The "bling basket" makes it fun!
All in all, we are off to a great start! 

I would say that one advantage to starting the pump so quickly after diagnosis is that we are still discombobulated from diagnosis.  I can't in all fairness say that starting the pump has been anything but a breeze.  

And not only that, but Miss Eleanor woke up the next day and decided she was going to take over her waking hours finger pokes and testing.  She loves the PDM, she's named it "Pumpy Purple," although it has a name change to "Pumpy Pink" when she changes skin colors.  We've made a real effort to provide bling for it and the Dexcom as well.  Gotta make that lemonade anywhere you can find it.  Oh happy day!
"Pumpy Purple" is her new BFF. 
Her first real working Pod. Yay!!

Thursday, June 6, 2013

Little Ticking Time Bombs - LADA, Addison's, Vitamin D, and Trial Net

The boys and I had blood drawn for TrialNet last week.  We're supposed to hear something back from them in 4 to 6 weeks.  I'm not the least bit concerned about myself.  I think it's pretty obvious that the genes for the T1D came from Michael's side, although I've obviously contributed my own share of autoimmune woes, with my arthritis.

I'm trying to decide how I even feel about the results of the TrialNet autoantibodies tests.  Of course the real bottom line is that we participated in the test because it might help uncover means to prevention or a cure.  It's nice that we also get personal information from it, but that was not my motivation.  Well… maybe a little.

I'm worried about the boys' results.  I don't want them to face this, and yet, there's this funny part of me that doesn't want to admit that I don't want them to have type 1, because to admit that would be to admit that there's "something wrong" with Eleanor.  I know it's all complicated and twisted up with my feelings of fairness.  It's the same way I feel when someone sees our diabetes management and says, "Oh my gosh! I could never do that!"

Yes you could.  Yes. You. Could.  And you would.  You just don't have to, and it's okay to be glad you don't have to, but maybe you should say that instead.    "Oh my gosh I'm so glad it's you and not me!" But that sounds selfish so you don't want to say it, but that's what you really mean, isn't it?  I don't blame you.

Eleanor's First Birthday at the Hospital
My husband was diagnosed with diabetes 14 years ago.  They said he was Type 2, because he was 34 years old at the time.  But they admitted he was one of the "weird ones."  7 years later he was also diagnosed with Addison's Disease.  Eleanor was a year old, she celebrated her first birthday in the hospital lobby on his floor.  The boys were 7 and 3.  He was in the hospital 10 days, and I was losing my mind because they could not figure out what was wrong with him.  I had actually come up with the Addison's diagnosis the very first night he checked himself into the ER.  I based my conclusion on, among other things, his low sodium level and that in recent years he had developed a nickel sized cafe au lait mark on his face up near is hairline on his cheek bone.  I can't remember every little detail I read, but when I read the symptoms, they all fit.  (I actually diagnosed his diabetes too, 14 years ago.  I started reading up on symptoms and I said, "You have diabetes!" before he ever went to the doctor - I wish I had some other thing to feel smug and vindicated about!)

It took me 10 days to work up the frustration level to tell the hospitalist how he needed to be tested.  I remember that day.  I must have left the kids with my dad or someone, because it was just Michael and me in his room when the hospitalist came in.  That was before the days of mobile devices,  so I had pages and pages of articles and research studies printed out from my research.

I was driven to the breaking point with spinning our wheels in the hospital and I told the hospitalist.  "These are the tests we need to run."  I pointed angrily at my sheaf of papers.  I had a catch in my voice and my adrenaline was pumping like crazy because I was sure I was in for a fight.
Eleanor, well protected from the Sun in Grand Cayman
I think he has Addison's Disease, and this is why… " I carefully made my case, "We need to get an endocrinologist in here."

When she said, "That all sounds very reasonable," and wrote the order, I didn't know what to do with my fight.  I felt like a deflated balloon expelling hot air. When the endocrinologist showed up he was a bit smug.  He said, "I'm kind of proud!  This is my first time to diagnose Addison's Disease."

To which my husband replied by pointing my way, "She's the one who diagnosed it." The endocrinologist reluctantly acknowledged that was the case.

The next part of the story is Eleanor's story.  She was diagnosed with Type 1 on March 10, 2013.

And here's what pisses me off.  AFTER she was diagnosed with T1D, I started really reading and learning, and getting myself educated, and I learned that the combination of Addison's Disease and Type 1 Diabetes is probably a form of Polyendocrine Syndrome, and that means that our kids have a 1 in 2 chance of developing Type 1 Diabetes.  That's really high.  And I didn't know it.  According to The Joslin Diabetes Center:

  • About 1 in 7 people with type 1 has a condition known as type 2 polyglandular autoimmune syndrome. In addition to type 1 diabetes, these people have thyroid disease, malfunctioning adrenal glands and sometimes other immune disorders. For those with this syndrome, the child's risk of having the syndrome, including type 1 diabetes, is 1 in 2, according to the American Diabetes Association (ADA).

No one told me my kids were sitting here like ticking time bombs.  I didn't know.

We always took great care to avoid sunburn
Unlike my diagnosis of Michael, I did not suspect diabetes when I took Eleanor in to urgent care that Sunday afternoon.  In fact, I even told the doctor that I was worried it was leukemia.  At least I made it clear that I was VERY concerned.  I knew full well this was not just  a bug.  I still have the text messages saved on my phone that I was sending to my mommy friends that day.  I argued with them that she wasn't acting like she was because she was still getting over the virus she'd had the weekend before.  I just knew. Funny how that intuition works so well when it comes to our babies.  I am thankful for that intuition.

But why didn't someone tell me?

this is the only kind of swimsuit
my kids have ever worn
And you know what else?  No one told me that vitamin D deficiency can increase the risk of developing Type 1.  Ironically, I was so anxious about sunburn and skin cancer that I exercised more than typical care in keeping my kids out of the sun.  They all wear wide brimmed hats.  They all wear long sleeved SPF factor rashguard style swimsuits, because I had a third degree sunburn in the mountains as a two year old, so I was more cautious about sun exposure than most of the mothers I know.  They'd get slathered with sunscreen every single time we were out in it.  Was my concern excessive?  Did my fear of the sun contribute to Eleanor's developing T1D?  Maybe.

Just a couple of weeks ago, my rheumatologist told me my own vitamin D levels were deficient and she put me on a prescription strength supplement.  There's a pretty good chance that Eleanor was also deficient.  Michael was diagnosed with his diabetes about 2 years after moving to the Pacific Northwest where there is a lot less sunlight.  The closer to the equator you get, the less common are diagnoses of Type 1 diabetes.  More cases are diagnosed in the winter months than in the spring and summer. Hmmmm… interesting.

They are well programed.  They always ask for sunscreen.
From the Mayo Clinic:Geography. The incidence of type 1 diabetes tends to increase as you travel away from the equator. People living in Finland and Sardinia have the highest incidence of type 1 diabetes — about two to three times higher than rates in the United States and 400 times that of people living in Venezuela.

and now she is excited to get
her first Omnipod shipment
If I had known that our kids had a 1 in 2 chance of developing type 1 diabetes, I would have watched more closely, and I would have read more about it, but I didn't know.  If I had read more about it, I might have been a little more careful to get them some sun exposure each day before we put on the sunscreen, but I didn't know.  If I had known that having Michael for a dad meant they were eligible to participate in TrialNet, we would have been doing that too.  But I didn't know.

I've read that patients who present at diagnosis with DKA (diabetic ketoacidosis) have a higher rate of complications than patients who are not in DKA at diagnosis.  Is that cause, effect or correlation?  I don't know,  Eleanor was in moderate DKA at diagnosis.  I can't help but wonder if we'd known her risk of T1D was so high we might have caught it sooner and she might NOT have presented in DKA, in which case, maybe her risk of complications wouldn't now be higher.  But I didn't know.

Now the boys are taking Vitamin D supplements,  I'm trying to make sure they all get a little sun, but not too much, and we are waiting on the results of those TrialNet tests. It's already too late for Eleanor.