Change is good, right? (Medtronic to Animas)

It is with some sadness that I am putting away Ben’s trusted Medtronic pump and starting over again with Animas.  I’ll miss some very user friendly features of the pump.  For instance, it was news to me that Medtronic has a patent on the very easy step of just accepting what the bolus wizard calculates instead of having to manually enter the value (kind of a dickhead move, but whatever, that’s business).  From a brief perusal of the instructions for the new Vibe there seems to be a workaround in which you press an up arrow, and all is good. (?)  Will miss customer service as well.

Won’t miss crappy battery life of recently replaced Medtronic pump.  We were cruising along fine for years, but the shiny new one we just got would die so quickly.  And so dramatically.  Wailing about the battery being out.  Demanding all settings be reset.  I learned about this the hard way- after trouble shooting a week of lows and finding that the school nurse changed the battery but not in less than a second, so the pump reset, and she re-entered the time and date, inverting AM and PM.  Good times.  I found, for us, basal rates matter.

Not my problem anymore.  I have the Animas Vibe!  What does this mean??  Well, waterproof in time for summer!  And integration with Dexcom.  This is huge.  Since getting the Dexcom in December, I’ve been sending Ben off to school with the  receiver shoved in his pocket, and I felt like I was sending a five year-old off on a windy day with hundred dollar bills taped to his body.   No longer!

The Vibe utilizes an older algorithm than the latest version of Dexcom apparently, so values might not match up with the current receiver, but I’m ok with that.

Old Dexcom algorithm= better than guessing BG.

And expensive receiver stays on my bedside table where it earns its keep night after night.

What I am most curious about is if insulin delivery will change.  Surely there is a variation in force.

Will this change things?       \rho \left(\frac{\partial \mathbf{u}}{\partial t} + \mathbf{u} \cdot \nabla \mathbf{u} \right) = -\nabla p + \nabla \cdot\mathbf{T}_\mathrm{D} + \mathbf{f}

JK, I don’t understand fluid dynamics.  But I want to.  No, I want my pump manufacturers to.  I want people “closing the loop” to take a big step back and demand we get optimal insulin delivery.  What is the point otherwise?  Our best bet right now for closed loop delivery is Bigfoot Biomedical.   (I guess I love all things Bigfoot.)  I want to talk to them.  Have they ever had their best efforts undermined by a crappy site?  Do they change infusion sites every 24 hours or something crazy like that?  They’ve got a former Medtronic guy on their team….    Forget it. I’m going to talk to the animal people.  (I decided this after talking with a friend who is designing sensors and software to find out when dairy cows are getting amorous.)  I’m actually kind of pissed that this whole new insulin pump I just bought has the EXACT same infusion sites as the old pump.   That’s just lazy.  Get to work people.

At any rate, Animas will be relieving Medtronic in a few days.  Will keep you posted.

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Taking a pass on Mother’s Day brunch

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Medtronic, I don’t want to leave you.

But it’s like you’re not even trying.  When I switched infusion sites (from Silhouette to Mio, or from angle-in to straight-in) I learned to deal with getting less out of sites. I started doing site changes every two days instead of three.   Lately, I am getting less than two days, sometimes not even one.  Medtronic, you’re not even coming home at night!

I know part of the problem is that I’ve been using the same small piece of real estate- upper booty- which doesn’t grow all that much from year 1 to year 5.  But sites are moved around well, and there is no visible scarring, no lumps to feel.  Still.  I have daydreams about switching to the Omnipod and slapping that thing on in more places.   While I don’t  have a problem with tubing, I do like that there is not the tethering to a belt- or person’s midline with pods.  But that alarming.  Most of my T1 mama friends have their kids using Omnipod, and I’ve heard a few stories about random site fails that, unlike the maddening, drawn-out, questionable fail of a Medtronic site, is even worse and is loud and insistent and in fact does not deliver any insulin at all until changed.  I don’t think I can have my own life or have a job or go to school or schedule any sort of appointment with consequences like that.

But I am so fed up with counting carbs and teasing out basal pattern changes and all the rest just to be undone by consistently faulty delivery by short-lived sites.  What is the point of closing the loop if we don’t have insulin delivery in the bag?

Can someone offer some advice here on getting better use out of what we have?  Or is it truly time for an insulin pump change?  Bigfoot, you have a tethered child right?  You have such good management. What is your secret?

I don’t really want to move to Omnipod. I’m staring at this demo kit they sent me and wondering when we’ll try it out.  I don’t really love the wireless idea.  Well, who wouldn’t love ditching tubing, but the thing is, you still have to carry a device, remember a device.  And with my child, if it’s not attached to him, I’m not sure it will make it home.

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I’m so frustrated. We have an endo appointment this week, and she will suggest all these changes that will be overly effective when a site is working but not effective enough when it regularly fails.  What is the point????

In the race to close the loop, I wish one company would step up and say, wait, we haven’t delivered on step one yet.  Let us correct this problem.   If you do this, I will buy your insulin pump.

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New Year, Same Old Pimp…With Some Dexcom Questions

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Happy New Year!   Four years into this thing, and we finally have a Dexcom.   We are late to the CGM table for a couple of reasons.  Our first attempt was in 2010 with the medieval version of the Medtronic sensor.   Never even got it inserted.  I was fine waiting a while for the next version.  After all, I was serving as his human continuous glucose monitor.  And then, after a few years of gradually incorporating others into Ben’s diabetes management, I realized that a large proportion of mistakes people were making were with correct blood sugar results staring them in the face.  To me, a CGM was not a panacea but rather a tool that could offer a false sense of security.   But then…kindergarten.  And some scary lows.  Fine, I’m ready now.

Santa brought us a Dexcom for Christmas, and I love it and hate it.  It’s fascinating and enlightening and liberating and…  is like watching a train wreck in slow motion.  I can’t believe people are getting these before they get a pump.  Dexcom pulls my puppet strings by the minute.   Even with a pump it’s hard to react (or not react) appropriately.   And one of the main reasons I wanted this device was to reduce the cognitive load of diabetes, but it actually adds to it.  I’m sure there is a learning curve and a learning to chill curve.

I know I can choose how much I react to it and set alarms appropriately (but let’s be honest, who needs an alarm when you incessantly hit the button, hit the button, hit the button like a lab rat with cocaine?) but am curious to know how you make it a helpful yet unobtrusive device at school?  I will certainly ditch the high alarm.  I will most likely set the low alarm pretty high, around 90, so that when he’s going nuts at one of the three recesses, it has a chance of catching him before he’s at 60.   I’m pretty sure I will have him wear the receiver as it won’t do much good sitting inside on the teacher’s desk when he’s out at recess.  Now, how to get a five-year old to not play with something that looks as alluring as an iphone….ben1

Also, I appreciate the importance of less is more with calibration and know to calibrate when blood sugar is steady, but….     Do you ever have a drift that just doesn’t correct with calibration?   Have any of you ever stopped the sensor and restarted (losing those two hours of course) in hopes of starting from scratch?  Sure, it can be done at day 7 when the Dexcom says, sorry, sensor is done, please insert new.  But has anyone done it earlier for the aforementioned fresh start purpose?   Any other Dexcom hacks I should be aware of?    And will Dexcom please allow for programming patterns into the next version?  I’m happy to get a low alert at 90 during the day when he’s actually dropping, but I have to remember each night to lower the low alarm so that when he’s sleeping blissfully for hours at a time at 90, I am too.

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Exploit the children

As someone whose child was diagnosed with diabetes as a baby, I have had years of being exclusively responsible for my son’s blood sugar management.  Eventually, some parts of the day had been outsourced to various nannies and preschool teachers, but even then, I was micro-managing over a cellphone.  kids2 While it has felt a little oppressive at times and, to steal a phrase from my father, has taken years off my life*, it is hard to hand over the reins.   I’m not talking about the school nurse.  I will continue trying to steer her choices with texts, emails, and telepathic mind control.  I’m talking more about what happens when a kid gets older and runs off to play with other kids.  Awesome, right?  Get lost, kid! He’s not totally on his own yet.  But I am taking baby steps, backing away.   And I’m training the children.

I am starting with his cousins in California.  They have a working understanding of blood sugar and what they need to do to keep Ben safe.   Every time we visit I restate what I’ve already told them and add something new.  Like each grade in school.  (Yawn.)   I always begin with, “What number does Ben need to be above?” and they shout back in unison, “70!”  Last year I sent them far ahead of me on the trail with Ben and his meter and instructions to either use it or, if they were anxious about that, to treat any weirdness or tiredness in Ben- or statement of hunger or thirst- with some glucose.  They didn’t use the meter and ended up handing out some sugar when he didn’t really need it, but he was fine. Better high than low.

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During the most recent visit, we left all the kids with a babysitter and went to celebrate my brother’s 40th birthday at a winery less than a mile away.  I told the babysitter the basics but had the kids on board to be in charge of Ben.  I got a call an hour later from his cousin Karlie.   She had it totally under control (and did his blood sugar check).   “Ben’s at 85, so I’m going to give him a snack.  The babysitter is giving us Doritos, but I think those could have gluten in them, so I’ll give Ben the other half of the protein bar you left him.”

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Now how do I get the kids where we live on board?  I don’t mean drop Ben off with them and take off.   I just want to be ready for the time when Ben is old enough to say see ya and head out for a bike ride.  I want each of his friends carrying candy- a boring candy that’s not too tempting.  Or at least they should know where to find the sugar on him (sewn into his underwear, candy necklace around his ankle, taped to spokes on his bike wheel….)

*I don’t really mean it has taken years off my life.  Granted, with the stress and lack of sleep, I could probably subtract a few, but left to my own devices (i.e., not caring for my beloved child and doing whatever I felt like instead) I would be making far poorer life choices, so actually, having him to care for is a gain in years.  Or maybe they just cancel each other out.

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Calculated Risk

I’ll get back to diabetes management and the total eradication of gluten in a bit.  I’m still lingering over long term strategies to keep my son alive long after I kick it.  I listed a few tricks for ensuring he doesn’t sleep alone, but there are a few danger laden years he needs to get through first.

I would meet the occasional Type 1 adult (or semi-adult) while out playing with a one or two-year old Ben and quiz them on their alcohol consumption in college.  And before.  And after.  How did they do it and not die?  I’d point out that my son, too, had Type 1 Diabetes.  And they’d look at me like I was nuts.  Was I really worried he was going out boozing?   Well, yes.  Maybe not tonight. But someday.

I know my parents worried about me.  I remember my dad yelling at me when, in high school, I said I had to stay at a friend’s house that night because we were going white bass fishing, and for reasons I can’t remember (made up or true) we had to be out on the boat at midnight.   He went off about drinking and driving and how he would kick my …and on and on.    As I walked out the door he hollered after me, in case I wasn’t lying, “Get a fishing license!”  I wasn’t lying– because I can’t.  I’m a horrible liar.  We were going fishing.  But we were also getting loaded.  Ah. Boats and alcohol.  Dumb asses.  Somehow I lived long enough to go to college.  But then it was more of the same except much, much more and with no accountability.  Then I made it out alive again!  Unless I didn’t, and this is purgatory.  On bad days, I think that it’s a real possibility.   I’m not proud of some of the things I’ve done, but I’ve learned.  I know at least one college Ben is not allowed to go to.

I’m trying really hard to identify what it was we were after with all that partying.  It wasn’t just alcohol.  It was more that moths-to-a-flame feeling.  What is that?  Danger.  An edge. There are plenty of ways to feel on the edge without the easier (and deadlier for diabetics) overindulgence route.   I encourage Ben’s risk taking.  I let him do just about anything if it seems he probably won’t die from it.  Break some bones.  Not looking forward to it, but go ahead.  I will send him up a mountain and down a river and … anywhere, really.   Any risk is better if it’s a known risk that he can mitigate than the risk of having one too many and going to sleep.

Posted in Helicopter Parenting Reinterpreted, I'm over-thinking this | 3 Comments

Lock up yer daughters

My first plan of action in playing outside the box in safeguarding Ben’s health after he’s out of my care is to get a night watchman.   Woman.

He shouldn’t sleep alone.  When he goes off to college or wherever he goes when he gets the boot at 18, I’d sleep easier knowing he’s sleeping with someone.

He’s been a ladies man since before he could talk, and he’s just getting better all the time.  This summer, at a garage sale, he overheard some little girl ask her mom for a purse, and he bought it for her.   Such a money move.

So what can I do as he grows up to cultivate this interest and guarantee his success?  Outside of keeping a text book devoted to the female orgasm in a visible spot on the bookshelf and leaving him alone long enough for him to get curious and read it, I plan to offer some guidelines.  So far I have:

  • Read good books and use interesting words.
  • Hold doors open, not just for her, but for little old ladies- especially little old ladies. (This one he has nailed.  Almost.  If the little old lady is trying to open the door herself, he’ll actually get in her way to stop her, and this has sometimes caused confusion.  They melt like butter though when they figure out his intention.)
  • Practice good oral hygiene.
  • Don’t finish your dinner before she does.  Extrapolate that to other areas of your relationship.
  • Help her get her coat on.    Also, live somewhere that gets chilly enough to require a coat.
  • Speak lovingly of your mother.
  • Learn how to make a fantastic fucking breakfast.

Also, this kid may not be cute forever, so he will have to learn how to play guitar.

That should do it, right?

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Posted in Diabetes management in your grown child, Getting laid | 3 Comments