Loop vs OpenAPS

Note:  This post is outdated because the features of Loop and OpenAPS have both been updated since this was originally published…The link to the updated post will be posted here shortly.

 

How do you choose the “best” DIY closed-loop system?  The answer is still a YDMV (your diabetes may vary) answer…but here’s some thoughts from a parent’s perspective.

I have a 14-year-old t1d daughter.  She is relatively independent and can count her own carbs fairly well.  After a little practice and gentle reminders, she can usually learn new things about her t1d management.  BUT, she’s not an independent adult.  She’s prone to forgetting things in the presence of her peers, getting distracted in busy environments, and not advocating for herself in the presence of authority figures.  She worries about fiddling with diabetes gear in class (“will the teacher think I’m playing on my phone if I need to text about diabetes?”).  So, as she goes out in the world with a system making automated decisions about insulin on her behalf, I have a different set of considerations about a system than an adult t1d closed-looper might.  (I’m going to try to keep the little kiddos in mind too as I walk through the differences between these two DIY closed loop systems; Loop and OpenAPS.)

In any comparison, it’s a good idea to know the person’s assumptions and priorities when they are doing the comparison.  Here’s my short list of the non-algorithm issues I considered in evaluating Loop life vs OpenAPS life.

  1. Size
  2. Cost
  3. Durability
  4. Ease of build
  5. Ease for caregivers/school nurses
  6. Troubleshooting
  7. Reliability
  8. Portability
  9. Ease of use
  10. Kid-specific features

I intentionally left BG control off the list is because either system is capable of achieving great BG results.  BUT, the ease/difficulty in the WAY you have to adjust your thinking, actions, or lifestyle to achieve the desired control was important to me.  And I’ll get to that shortly.

Size, Cost, and Durability (Advantage: Even)

These factors are virtually the same between the systems.  Both systems can be easily put in a box about the size of a tic-tac box.  The Loop system costs about $99 annually (Apple developer program), Heroku (for Nightscout) is free, and the RileyLink costs $135.  OpenAPS costs about $163 for the parts, and there are potentially some data costs depending on how you set up your system.  If you want to run multiple rigs, you may need to upgrade to the $7 per month Heroku “hobby” plan (for one rig you should be safe under the free Heroku plan still).

Both systems consist of a small circuit board and a rechargeable lipo battery…so the same care and durability should be expected between the systems.  We plug both systems in for recharge nightly and they last the whole day on the one charge.

OpenAPS Rig on the left, RileyLink on the right

IMG_5352

 

Ease of build (Advantage Loop)

I had both systems built and operational within about 2 hours of getting all the parts together.  Am I some sort of mad genius with computers?  Absolutely not.  You can do this, too.  There are guides for both systems that tell you what to do and the order to do it.  Both systems have very helpful groups on Gitter where people will help you through the setup process…Loop and OpenAPS.

That said, Loop can initially seem like a more relaxing build for the people who are uncomfortable with “code” since much of it is done through the Apple interface (think, pictures and symbols).  OpenAPS is done through linux commands and scripts.  HOWEVER, do not let this deter you.  Both systems will take you into places on your computer you have likely never been before (Loop to Xcode, OpenAPS to Terminal), and you will live to tell the story.  I am actively involved in providing some updates to the OpenAPS docs that will hopefully help new, non-code people through the setup process…just as easily as Loop can be done.  To be honest, setting up an Apple developer account was probably the most frustrating part of the Loop setup and putting two tiny screws in the explorer board was probably the most frustrating part of the OpenAPS setup.  Notice, neither complaint is actually about the software building.

I’m here to say…don’t let your intimidation stop you from trying either or both systems. (Perhaps slight advantage to Loop here…but the gap is closing.)

Ease for Caregivers/Small Kids (Advantage OpenAPS)

Here’s one that adult t1ds probably don’t have to worry about.  Can a school staff member reliably dose your kid with insulin through the closed loop system?  Here is where I was surprised to see a large difference between the systems potentially.  Anna has operated her Loop inputs fairly independently and has gotten used to some of the quirks, so in many ways she’s more like an adult user.  However, for little kids relying on school staff for meal bolusing the differences between systems may be more important.  Loop uses the app to enter meal carbs and calculate/administer boluses; whereas OpenAPS uses the pump.  OpenAPS likely has an advantage for these considerations:

  • Failed boluses  – Every once in awhile, for whatever reason, a bolus command in the Loop app will not go through.  A notification pops up on the iPhone saying “Bolus may have Failed”.  If the caregiver/kid doesn’t notice the notification, it may be some time before the missed bolus is recognized.    And unfortunately, sometimes, the bolus actually will begin shortly after the notification pops up.  The caregiver/kid will have to be trust-worthy enough to recognize the need to look for the message and if the message appears, to first check the pump to ensure the bolus is not actually already in progress before attempting to re-enter the bolus command.  Since OpenAPS is bolusing directly from the pump, failed boluses would be immediately obvious to a caregiver/kid. (Advantage OpenAPS)
  • Bolus wizard guard – The default setting for Loop is that the app will not suggest a bolus if the t1d is below, or predicted to go below, their minimum BG target.  This feature, called the bolus wizard guard, can result in the carbs for a meal being entered but no bolus being offered.  The bolus wizard guard can be removed or modified by parents, but it is definitely something to be aware of.  Many new Loop users fail to modify this feature and find no bolus being given.  Parents should have a plan in place with the caregivers in the event no bolus is offered by the app.  OpenAPS does not have an analogous bolus wizard guard.  (Advantage OpenAPS)
  • Double Carb Entry – When a carb entry is entered in the Loop app, there is a “save” button to move you onto the bolus recommendation part (just like a pump’s bolus wizard).  In both Loop and OpenAPS, an entered carb is saved by default.  Backing out of a bolus wizard does not cancel the carb entry.  In Loop, the caregiver/kid can go into the app and cancel/edit the unwanted carb entry.  However, in OpenAPS you cannot edit the entry.  So both systems require a consistent method of carb entry to prevent unintentional double entries. (Advantage Loop)
  • Yellow/Red loop – Loop will not bolus if it is having trouble communicating with the pump or receiving BG readings.  The Loop will turn yellow or red, depending on how long it has had problems with communications.  If a caregiver/kid doesn’t resolve the issue, they can still enter a bolus through the pump directly as a backup.  However, the caregiver/kid will need to separately enter the carbs into the app (Loop does not read the pump’s carb entries).  Since OpenAPS boluses are directly from the pump, meal boluses can continue as normal even in the event the looping is not functional at the time of the meal.  No special considerations are needed.  (Advantage OpenAPS)
  • Carb Absorption Time – Loop has a unique feature called Carb Absorption Time for each carb entry.  Basically, it is akin to saying how fast or slow Loop should expect the food to absorb (and thus affect BG levels).  If you have new food or classroom treats, your caregiver/kid will need to estimate the carb abs time of the food.  Loop can tolerate some inaccuracy in those estimates, but if you are off by significant amount (like 60 minutes vs 120 minutes estimate) you may end up under- or over-corrected by Loop as the meal progresses.  Also, it’s important that your caregiver/kid respect the importance of entering in the correct carb absorption time for a meal…otherwise unwanted BG impacts can occur.  In OpenAPS, the absorption of carbs is tracked dynamically by the loop.  Therefore, the caregiver/kid does not need to estimate a carb absorption time as part of their mealtime entries.  (Advantage OpenAPS)
  • Emergency tube changes – If you child needs an emergency tubing change at school, there is a special consideration for Loop users to be aware of.  Priming new tubing, without a change of reservoir, will require the caregiver/kid to delete 30 minutes of reservoir history in order to not have the primed insulin count as delivered insulin (IOB).  Parents and adult t1d users of Loop get pretty used to this action, but trying to describe this step over the phone with school staff or young kids could get pretty difficult.  OpenAPS reads the pump’s actions and will not count primed insulin as IOB.  A notation is also made on the Nightscount site automatically when a prime event occurs.  (Advantage OpenAPS)
  • Net IOB – The Loop app tracks net IOB (IOB from both boluses and basals). As such every Loop bolus and correction is automatically consider net IOB. However, Medtronic pumps do not track IOB from temp basals. In OpenAPS, since there is no app, netIOB is usually seen in Nightscout (in fact, the IOB pill will even break down the basal IOB contribution). Caregivers/kids will need to be aware that the usual “take BG before a meal and add a correction adjustment to meal bolus using pump’s bolus wizard” should not happen. Most OpenAPS users will only bolus for their meals using straight carb ratio, and not use the pump to suggest a +/- correction bolus. (Advantage Loop)
  • Corrections – BG momentum in Loop has proved to be a difficult concept for my teen to watch for in Loop.  In times of rapidly increasing, BG momentum can tend to over-predict and thus offer too strong a bolus correction.  This can also affect meal boluses in Loop.  OpenAPS boluses using straight carb ratios seem slightly safer for small kids under remote care.  Plus the bolus snooze option helps corrections take effect without having the loop go to low-temping when you might be stuck on a stubborn high for whatever reason. (Advantage OpenAPS)

Troubleshooting (Advantage even)

Loop relies on the RileyLink for communications, OpenAPS relies on the explorer board.  Both feed information into Nightscout about the status of those communications and looping.  A remote parent can receive information about potential problems that may be causing the loop to stop running.

For both systems, the solution to getting looping started again is usually pretty straight-forward.  For Loop, it’s almost always a retune.  For OpenAPS, a power button push.  However, advantage goes slightly to OpenAPS because a power button push is a little faster and doesn’t require opening an app.  And if your kid isn’t capable of retuning the RileyLink themselves, explaining how to retune a RileyLink can be a little cumbersome over text messages or phone calls with school staff.  A power button is a more straight-forward explanation.

If a fatal program error happens on either system, they can both be rebuilt fairly quickly and easily following the original steps.

Reliability (Advantage OpenAPS)

How often does each system go down?  How far can your kid get from the rig before communications/looping quit?  The answer is “it depends”.  If you live in a “noisy” radio frequency environment, you may find yourself needing to retune RileyLink fairly often.  If you live in an area with no wifi or cell service, you will likely have a poor OpenAPS experience*.

But, the advantage here goes to OpenAPS’s rig because it’s communications has a longer reach and seem more stable.  Kids don’t have to be quite as close to their rig as they do to the RileyLink.  On average, I’d estimate we retuned the RileyLink about 2-3 times per day.  On OpenAPS, we have had to power cycle the rig only once in 12 days (and I think that actually was just my impatience rather than truly a problem).

Portability (Advantage even)

The portability of Loop is pretty great.  You could take it to the middle of nowhere and still be able to run a closed-loop…no internet, wifi or cell needed.  HOWEVER, I’m a remotely-monitoring parent and I like to check Nightscout to see how things are going.  So, even Loop needs internet connection for the parent to monitor things.  (If I were reviewing portability as an adult t1d, Loop would be an easy advantage.)

The newest release of OpenAPS also has made the system truly “portable” in my eyes.  Before this update, kids might have to remember to turn on their phone hotspots when leaving a known wifi network.  That’s not practical for kids.  But, the new release is a very stable handoff between known wifi networks and iPhone hotspot.  So, as your kid leaves home to go to school, the rig will automatically connect with the kid’s iPhone via bluetooth hotspot tether.  When your kid gets to school, it can pick up on the school’s wifi automatically…thus saving you on cellular data and hassle.

*There are options for running OpenAPS without internet like Loop (aka “camping mode”).  I’m just not setup like that.  You could directly plug-in the dexcom receiver to the rig.  Or you could use X-drip to upload locally to the rig.

For summer diabetes camp in the woods…we will likely use Loop.  I think.  Maybe.

Ease of Use (Advantage OpenAPS)

Oooph.  This one is tough.  The iPhone screen is soooo sexy.  Kids LOVE the iPhone.  And they love not bolusing from the pump sometimes.  Since the iPhone is already glued to her hands, Loop gets a lot of love from my 14 year old.

But, the ease of entering a meal bolus from OpenAPS is just heaps easier than Loop.  Kids (heck, even adults) can have a hard time estimating what a proper carb absorption time for a food should be.

There’s also a really sweet feature that you can find in OpenAPS that you can’t get in Loop.  As a parent, you can remotely set a temp BG target using Nightscout’s careportal.  When my daughter goes to track practice, I can set a temp BG target ahead of time to help keep her in a slightly higher target range.  I can also easily cancel the temp target if practice gets out early or situations change.

IMG_5193

I love both systems…but I do think the OpenAPS is easier to “use” if you are a parent sending your kid to a slumber party or school dance where they will have new foods and perhaps harder bolusing than they might be used to under your care.  Also nice to have some ability to remotely help nudge loop behavior “up or down” through the use of temp BG targets.  It definitely has saved me quite a few text messages as a result.

Kid-specific features (Advantage OpenAPS)

There are some feature that OpenAPS specifically designed to adapt for kid t1ds.  We haven’t used or tested these, but they may be of interest to some of you reading here.

  • Override High Target with Low: “Defaults to false, but can be turned on if you have a situation where you want someone (a school caregiver, for example) to use the bolus wizard for meal boluses. If set to “True”, then the bolus wizard will calculate boluses with the high end of the BG target, but OpenAPS will target the low end of that range. So if you have a target range of 100-120; and set this to true; bolus wizard will adjust to 120 and the loop will target 100. If you have this on, you probably also want a wide range target, rather than a narrow (i.e. 100-100) target.”
  • Carb Ratio Adjustment: “This is another safety setting that may be useful for those with secondary caregivers who aren’t dedicated to looking up net IOB and being aware of the status of the closed loop system. The default is 1 (i.e. do not adjust the carb ratio; off). However, in the secondary caregiver situation you may want to set a higher carb ratio to reduce the size of a manual bolus given at any time. With this ratio set to 1.1, for example, the loop would multiple the carb inputs by 10%, and use that number to calculate additional insulin. This can also be used by OpenAPS users who rely on the bolus wizard to calculate their meal bolus, but who want to only bolus for a fraction of the meal, and allow advanced meal assist to high-temp for the rest.”

Conclusions (Advantage OpenAPS)

I feel like I’m cheating on my best friend Loop by saying that I’ve really enjoyed OpenAPS.  All the technical stuff above spelled out…here’s the short version of the parts I’ve noticed the most.

Fewer texts to Anna during school:  Through the use of temp BG targets, I don’t have to text her to remind her to prepare the two hours ahead for track workout.  I don’t text her anymore to ask her to retune the Loop.  I don’t get texts from her asking for carb absorption times for food from classroom parties.  I spend less time asking her if she got too far from her RileyLink.

Easier mental at meal time:  I have enjoyed not thinking about carb absorption times.  Now I’m back to my regular thoughts about whether a meal would do well to split bolus…and that thought is the same with both systems regardless.  (Anna says this part never really bothered her.)

OpenAPS pill:  I get a little more information from the OpenAPS pill.  I have enjoyed that.  I also enjoy seeing the Basal IOB using the Nightscout IOB pill.

Auto-tune:  I haven’t really touched on it here much…but there’s a newly unveiled feature called auto-tune which looks back on the previous day’s data and can adjust ISF and basals automatically where it sees the values may be slightly off.  I think that needs a special post of it’s own.

Loop enacted:  I have REALLY enjoyed never seeing that the loop is stalled out or needs retuning when I open the Nightscout app.  I have pretty much gotten used to seeing the OpenAPS rig always functioning.

Easier to switch between patterns:  Anna has definite differences between school days and non-school days.  On school days, she needs about 6 hours of a lower basal rate during the day and through track practice.  Switching between patterns on the pump has been just a little easier than switching between the two different Loop apps that I had setup.  It’s just one little less thing to do.

If I were an adult t1d, my metrics would probably weigh the various considerations quite differently.  But as a parent of a t1d, I’ve really enjoyed OpenAPS.  We have great BG control on both systems…I’m just trying to find ways that we talk less about diabetes and more about everything else.

Looping in our Life

On August 29, 2016 after my daughter’s first week in high school, she asked to change her insulin pump.  She no longer wanted to be on omnipod…she told me she wanted a tubed pump.  Her reasons were simple; she wanted to show off a pump and she wanted to just be able to directly bolus from a pump (instead of pulling out her PDM bag and unzipping).  I was thrilled because this opened the door at last to the DIY closed-looping community that I’d been reading about for awhile.

You can read about the history of the community in many places (I’ll add links to the bottom of this post later, in fact); but the short version is some really smart people got tired of data sitting unused and unaccessed.  They all developed various parts and pieces (both software and hardware) to make it so that the CGM can talk to an insulin pump and make automated decisions about basal insulin delivery to help stay in target BG range.

Blood sugars going up?  Insulin pump is told to delivery more insulin.  Blood sugars going down?  Insulin pump is told to deliver less insulin.  That’s a grossly oversimplified version of the algorithm (math and decision tree) that is the heart of a closed-loop system, but that gives the rough idea.

So why did Anna need a tubed pump to make this happen?  Well the commercial pump industry has software on each of their pumps that control how outside devices, like remote controls or remote meters, can communicate with the pump.  It turns out that certain older model medtronic pumps have a software (aka firmware) that will allow the DIY community to access the commands of the pump.  That communication portal has been shut down in newer versions and does not exist in other brands of pumps to-date.  Therefore, it can’t be omnipod, animas, t-slim, or whatever other pump brand name or model you’ll ask about.  It has to be a certain Medtronic model of pump and a certain range of firmware versions.

Now, originally I thought the only DIY closed loop system was one called OpenAPS.  And my original impressions (in August 2016) was that the rig was clunky big and the setup was only for the type of people who were comfortable with linux commands (of which I am not).  So while I was thrilled to have this option available, I didn’t think it was actually going to fly with Anna.  She wasn’t going to want to carry a ton of gear.  She wouldn’t have the ability to troubleshoot linux commands at school if the system went down.

I searched for awhile looking for options that might make the OpenAPS “rig” (gear pack) smaller.   In searching Twitter, I found this photo of a boy starting school and his iPhone screen showed something I’d never seen before in all my #openaps searching.  This kid was holding something that if I zoomed in looked like BG graphs on an iPhone.

Researching it further, I discovered the iPhone app he was using is called Loop.  Loop is a DIY closed loop system, but it is not the same as OpenAPS. This opened up worlds to me.  Loop had a small form factor (not a lot to carry) and could be on an iPhone (what kid wouldn’t want that? And it wasn’t linux, which bode well for my ability to get it built potentially).

You know those instances where the world of innovation just seem to take leaps and bounds all at the same time?  Three days after the photo above was posted, Dana of OpenAPS tweeted a photo of the new smaller OpenAPS rig.  It’s called an explorer board/edison rig.  ACK…now I had some real useable choices that could be available for my teen t1d.

But, which one to choose?  Well, the answer was simple enough.  Building the Loop system was more immediately available.  The smaller OpenAPS rig’s parts were still not in production and therefore not available.  Plus…teen and iPhone.  That’s a slam dunk.

If you know me from online at all, you know I threw myself into Loop (and finding that elusive old medtronic pump).  Our RileyLink (communications part of the Loop system) arrived on September 21st and it took me about 2 hours to “build” our system.  We closed the loop that night and never looked back.

We’ve achieved amazing results on Loop.  The sleep at night has been fantastic.  The BG control unbelievable.  The independence for the teen t1d is glorious.  I spent less time texting her at school to tell her to adjust pump settings or give corrections.  Loop was like sending along a diabetes babysitter with my kid all day.  It just simply changed EVERYTHING.

On October 29th, I went to Nightscout’s Hackathon in San Francisco.  I just wanted to see the people who created the systems (Nightscout, pebble watch faces, Loop, OpenAPS) in person.  I wanted to throw flower petals at their feet and thank them for the tireless work that they’ve done.

I did all that, but also managed to walk away motivated to pay-it-forward however I could.  Since I can’t hack, solder, code, or program…I decided that I would work to make the online documentation for Loop more robust.  I threw myself into that effort over the next month(s).  The result was a lot of wiki pages and screenshots, but I think it was well worth the time.  I learned a WHOLE lot about the Loop system as a result, which definitely helped improve my Loop success.

We would likely have never tried a different closed loop system, except for two things.

  • Loop has some little quirks that people seemed to be struggling with, in particular with kids at school.
  • I couldn’t find a good comparative review of OpenAPS vs Loop from a PARENT perspective.

Since I love trying new things, on January 18th, I ordered the necessary gear for building an OpenAPS rig and put on my big girl pants ready to slog through linux.  The gear showed up on January 21st, two days earlier than expected.  And here’s the super unexpected part….

Within a few hours of delivery, I had a fully functional OpenAPS rig going.  It was “supposed” to be a lot harder than that.  I’d heard it was really tough to build those rigs.  And I don’t know linux.  What happened?  Turns out the instructions are quite good, just intimidating on the surface.

I had to pry the Loop app out of my kid’s hands.  She didn’t go super willingly into this experiment.  She doesn’t like changes to her diabetes management system.  But, she agreed to let me try this out so that I could learn first-hand what the practical differences were between the two systems.  ESPECIALLY from the perspective of a parent and t1d kid use scenario.

So now that leaves at the current day.  We’ve been running OpenAPS rig for about 10 days and I have some good idea now of the differences between the systems.  It’s time to get that comparison going.

 

 

 

 

 

 

 

 

Think Like a Pancreas

Secret handshakes for special groups.  Decoder rings to translate hidden messages.  Star-bellies and not-star-bellies (for the Dr. Suess fans).  I felt like I’d finally been given the membership to the special club when I’d read Think Like A Pancreas.  Suddenly, the burden of type 1 diabetes management felt ever so much lighter.  Not quite as feel-good as Julie Andrews singing on top of a Swiss mountain, but pretty damn close.

happy day

The book lays out how to figure out insulin needs.  Basals and boluses.  Pumps and multiple daily injections.  It has all the information.

I’m an engineer by training, and a numbers geek by birth.  I have always felt comfortable with math and this book broke diabetes down into numbers.  It finally allowed me to look at all those numbers I was collecting in the log books and make sense of them FOR MYSELF.  I didn’t have to call the endo to have her do it for me…I could participate in the management and likely do it better because I simply had more hour-to-hour information than the endo had about what was going into those numbers (exercise, stress, sleep, etc).

The first take-away from the book was basals.  That a correct basal should hold you steady throughout the day.  This hadn’t been really well explained by any of the medical professionals we’d talked with.  All we’d been told is that basals were involved in your keeping your waking number steady, but it’s actually a far more complex system than that.    The book discusses the value of doing a good basal testing program periodically to test whether your basal is holding you steady.  If you’re seeing drifts in blood sugar trends up or down in the absence of food or rapid insulin, that basal might need adjusting.  The book helps define an overnight target of <30 mg/dL change from bedtime to wake.  If you’re dropping or raising more than 30 mg/dL, it might be time for a change in basal doses.

The second take-away from the book was insulin action time.  The doctors had explained that Anna’s rapid insulin (humalog, at the time) would last 4 hours in her body, with a peak action time at about 1 hour after injection.  In other words, her blood sugar would still potentially be dropping up to 4 hours after she bolused for food.  Most online sources from diabetes websites to drug manufacturer’s quote an action time of about 4-6 hours, like this one from Diabetesnet.com

insulin action time

This book gave me the knowledge that in practice, insulin action time varies from person to person.  When we tested Anna’s insulin action time, it actually showed that rapid insulin only lasts 2 hours in her system.  What a difference!  This meant we understood a little better what mechanisms were at play (or not at play) when we were looking at how her blood sugars were behaving more than 2 hours after a meal.  If we saw rising blood sugars more than 2 hours after a meal or correction, we started to know that maybe her basals weren’t enough (and the opposite for falling blood sugars).

The third take-away from the book was about insulin correction factor.  We learned how to test, in the absence of food and exercise, how much one unit of insulin would drop her blood sugar.  We did the experiment several times and came up with a consistent result.  One unit dropped Anna’s blood sugar by 30 mg/dL, not 50 mg/dL like the doctors had been giving us to work with.

Armed with this new knowledge, I started to fine-tune Anna’s basal and bolus numbers based on the daily numbers we’d been collecting.  I made little tweaks to the dosing, timing, and started to try to predict what number she’d be two hours after a meal.  When she wasn’t near that prediction, I’d look for possible reasons why…exercise, faulty carb counting…and I’d keep notes to help me see if I could find patterns.  After just over a week or so, I’d figured out that Anna needed 12 units of lantus, a carb ratio of 1:8, and a correction factor of 1:30.  We stopped calling our numbers into the doctor and were making adjustments as needed.  Ourselves.  It felt great to finally see some insight into the numbers.

The numbers showed the progress (average blood sugar and the standard deviation):

Week 1: 230 mg/dL ± 75 (hospital and home)

Week 2: 160 mg/dL ± 54 (with endo adjustments)

Week 3: 144 mg/dL ± 49 (Think Like a Pancreas)

Week 4: 144 mg/dL ± 41

Week 5: 120 mg/dL ± 33

But wait until you see what happens in week 6!!  The CGM arrives!

Week 2 of Type 1 diabetes

Freshly diagnosed with a scary disease, we decided to do what anyone would…go on our pre-scheduled family vacation for Spring Break.  We’d booked a lovely cabin in Yosemite with my parents and my brother’s family.  The trip had been planned for months in advance, and the weather report included a good chance of snowfall while we would be there.  How could we possibly miss out on that?

yosemite

The doctors told us to simply call in every day to report our carbs/insulin/blood sugar numbers, and that they would review them to see if any dosing changes needed to be done.  It was scary, I totally admit it.  We were going somewhere fairly removed from medical services, hadn’t yet experienced a low blood sugar event and barely knew what to expect.  But, life needs to go on even in the scary parts.

We had a great time.  The kids played with their cousins, it snowed a bunch for two days.  Sledding, snowballs, exploring, hiking.  All great fun!  We had access to a full kitchen, which made diabetes a lot easier for us.

foresta yosemite

yosemite sledding

yosemite valley floor

yosemite valley

We seemed to still be dealing with such variable blood sugars…each time we checked, we had no idea what number to expect.  Midway through the trip, we’d had her lowest blood sugar check since diagnosis. 83 mg/dL…while in the car driving back to the cabin from the valley floor.  Anna said she had started to feel “shaky” and when we saw such a low number (at the time), we got a little panicky.  Worried if the 10 minutes we still had to drive would be enough time to get home safely.  Did we need to pull the car over right away and feed her the emergency 15 grams of juice that the doctors had told us about?  We opted to keep driving and gave her snacks when we got back to the cabin.  Whew, our first low alert.  Made it out only slightly shaken (pun intended).

Also a memorable on the trip, it was the first time I tried to do a little correction before bedtime.  Anna tested at 188 mg/dL at bedtime one night and she’d been consistently waking up above range.  So, I thought that I’d try a one unit correction (half what the normal daytime correction would have been).  By the calculations the doctors had provided, I expected her to drop to about 138 mg/dL, which would’ve felt just great to me.  Maybe a little out of range, but still comfortably close to it while avoiding a low.  But when I tested her at 2am and the meter read 63 mg/dL.  I got cold sweats.  WTF?!  How could she have dropped that fast, that much?!  Had I almost killed my kid?!  I gave her some juice, but I remained solidly awake.  We still had more days left on the trip, but I’d completely lost my will to be there.  I wanted nothing more than to go home to my safety net.  I wanted (fast, not cabin-speed) internet.  I wanted medical journals.  I wanted to KNOW WHAT WAS GOING ON.  I wanted CONTROL.  I did not want the knowledge to be over with the doctors exclusively.  I shouldn’t be calling in numbers to them and not knowing how they were evaluating them, what they were looking for.  This should no longer be some secret handshake that only the doctors understood.  I wanted the damn decoder ring, too.  LET ME IN!  I NEED TO KNOW WHAT’S HAPPENING!

So, I did what anyone would do at 2am.  I drank. I googled.  How to dose insulin, how do doctors adjust insulin doses, best books for diabetes, and various other google topics.  They all provided a common answer.  Think Like A Pancreas repeated as a good solid read.  I downloaded it to my kindle and proceeded to read the book entirely by 6am (skipping the parts that had to do with insulin pumps since those weren’t something we were using).  Those were hands-down the best 4 hours I’d invested in diabetes since diagnosis.  It changed EVERYTHING.

Think Like a Pancreas

 

 

Pediatric Endocrinologist first visit

We live in a fairly small town.  It’s not tiny, but having grown up in San Diego…it feels itsy bitsy sometimes.  For example, we don’t have a single escalator in our town.  There’s only one movie theater, no malls, and one high school.  There are 36 blocks to the length of our main street.  Short blocks, not like big city blocks.  So apparently, we don’t attract and support the need for a local pediatric endocrinologist.  Even if you add in all the t1D kids from our neighboring towns…still not enough.

Our three options for pediatric endos all involved at least a 3 hour drive…plus an hour to account for traffic, parking, and making sure we are on time for appointments.  We chose the one that had a mall next to it (and an incredible reputation for medical care).  We were released from the hospital on Tuesday March 31st and had our first endo appointment Friday April 3rd.

We kept a log of what we fed Anna, what her blood sugars were, and how much insulin she received.  We had been told to give her 1 unit of insulin to every 20 grams of carbs.  We also had been told a correction factor where 1 unit of insulin should reduce her blood sugar by 100 mg/dL.  Her target blood sugar was set to 120 mg/dL.  We’d also been told to check her at least once in the middle of the night.

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We followed all the rules and as you can see above…getting into target range was very difficult.  I didn’t understand why we weren’t getting consistent results or reaching target blood sugars.  I didn’t know at the time just how much number-crunching new diabetes takes to dial in dosing.  And just how many puzzle pieces we were still missing.

We went to our first endo appointment armed with our log, a list of questions, and an ice chest full of carb-counted baggies of food since we’d be gone all day.  That first trip out of the house as a new t1d family was quite an adventure.  Much like traveling with a newborn for the first time. The packing list was not left to chance, it got written down on a sheet of paper and carefully double-checked before leaving the garage.  The oh-shit scenarios that we planned for were double what we usually plan…basically we packed as if we needed to outlast the Donner party.

At the appointment, we were greeted by many nice people.  A head endo, a fellow endo, a certified diabetes educator, a dietician, a social worker, and a trialNet coordinator.  Whew…we met a lot of people that day.  All very nice and patient.

They took a look at all our records from the previous few days of blood sugars and meals.  Like a magician, they came up with a new carb ratio 1:15 and a new correction factor 1 unit drops 50 mg/dL.  They also upped her daily lantus to 11 units from 8 units.  They kept the same target blood sugar range of 100-120 mg/dL.

insulin dosing sheet

We asked a bunch of questions like “if this happens, what should we do or expect…”  Frustratingly, it seemed like almost every answer was given with a big fat asterisk of “it depends on the person, you’ll learn.”  I really thought that they’d hand me a big flow chart with those little “yes” and “no” arrows pointing to the next decision or action item.  Apparently, that does not exist for type 1 diabetes.  I’ve tried several times to sketch it out and still can’t fit it all in a page.

Worse, they said a bunch of new variables that I hadn’t considered.  Stress, emotions, weather, hormones, illness, medications, food, travel, sleep…a seemingly unending list of things that could affect her blood sugars and how they behave at any given time.  How would it be possible to know how to dose insulin correctly with all of these factors going on?

We were a nervous wreck.  The assurance I really wanted was to find out how we could keep her safe.  How to keep her from going low, passing out and having seizure.  As a parent without any diabetes experience, I imagined it as some very quick process that she’d be fine one second and then suddenly shake and drop to the floor.  I felt like Anna was a ticking time bomb about to GO LOW at any random moment.  We asked them about that.  “How fast does low blood sugar happen?  Will we have notice?  Enough to do something about it?”  Unfortunately, they still hedged their answers with “it depends” and we were left feeling quite vulnerable and fearful.

At the end of the appointment, we asked them for any apps that they felt were helpful.  They mentioned the Figwee app (5 out of 5 stars for that recommendation!).  We’d also been using the MySugr app already to help us record what was on her paper log.

Oddly, the endo did not mention a continuous glucose monitor (CGM) during our appointment.  So I asked about this nifty device I’d seen on instagram (I’d taken to searching instagram for the #t1d hashtag to see if there was any useful t1d info).  @SugarStalking had posted a photo of a watch she was wearing and the caption said “Thanks to technology for letting me watch my son play soccer and knowing he’s safe #t1d #dexcom #cgm #nightscout”.  The watch face showed a blood sugar measurement.  I knew I had to have the same system, as soon as possible.

cgm

The endo said something like “oh, dexcom.  Yes, if you’re interested in that…sure we can write a prescription for it.  I think getting it set-up takes a little bit of coding familiarity, but if you want to do it…sure.”  [Little did I know that that would be the most important part of our visit that day.  They started the paperwork for a CGM that day and we had it by April 29th.]

We had a surprise for Anna at the end of the day.  Her best friend that had moved away, that she missed terribly, had secretly driven with her mom to meet-up with us.  As we got up to leave the appointment, we said to Anna “There’s one last thing we haven’t told you.  We have a surprise.”  At which point she immediately started crying big tears and said “I don’t want any more surprises.  They’ve all been terrible this week.  Please, no more surprises.”

Opps, parent fail.  We recovered quickly and reassured her this was a good surprise.  That Maddie was coming for a visit.  Right then.  We were meeting them in 10 minutes, having dinner together and walking the kids’ favorite stores at the mall.  It was the first time we’d seen true happiness in her since diagnosis.  I’ll never be able to repay the kindness of Jill and Maddie for agreeing to drive hours to meet us.  To give Anna that human touch, BFF comfort.

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So the short summary of the appointment:

Disappointment that the t1d how-to answers weren’t more definitive, easy to understand.  No t1d cliff-notes?

Mystery how they were adjusting the doses.

Wondering why it’s not standard-of-care to suggest CGM?

Grateful for their time and attention.