Category: diabetes

DIA: Duration of Insulin Action

At our first endocrinologist appointment, I distinctly remember the doctor telling us that rapid acting insulins (like humalog and novolog) had insulin durations of about 5 hours.  I remember looking at the insulin curves…and I remember that the curves were distinctly skewed to the left.  Meaning, most of the insulin “action” seemed to be in the first few hours and it peaked around 90 minutes.  I also remember them saying to wait until about 2 hours had passed since the last insulin dose before considering a corrective dose of insulin…to give that insulin its due time to work.  Based on that information, I had concluded that the “tail” of the insulin duration (from hours 3-5) contributed relatively little to the insulin experience.  After all, looking at curves like the one below, it would pretty easy to say that the effect of insulin seems pretty darned small between hours 3-5 compared to hours 0-3.

Back when we were on omnipod, we used a 2 hour DIA.  Basically, we picked that setting because it seemed like after about 2 hours we noticed that insulin seemed to wear off…corrections from high BGs slowed way down after 2 hours, or our BG control of food seemed to falter for big meals around 2 hours and we’d need to give more.  We had pretty great control with 2 hours of DIA.

Our omnipod system basically only used the DIA to calculate the insulin remaining after it had been given…the insulin-on-board (IOB).  So, if BGs were coming down too quickly (have you seen what happens to kids’ BGs on trampolines?), we would look at the IOB and eat an appropriate amount of carbs to try to offset the remaining IOB.

I always knew my estimate of DIA was probably a little off.  I knew I was ignoring that little bit of insulin effect from hours 3-5.  Especially because when we had large carb meals…the system would tell me that her insulin had gone to zero, but Anna would still be dropping.  On large carb meals, those “little bits of tail” between hours 3-5 added up to a significant amount because our boluses were proportionately bigger.  The “noise” of everyday diabetes variations were less apt to hide the 3-5 hour insulin on those big meals.  But most of the time 2 hours seemed to work “about right”…so we stuck to it.

Since we’ve started to manage diabetes with closed loop systems (OpenAPS and Loop), the effect of DIA (and especially that late insulin effect tail) has become more apparent and important.  So, I thought it would be good to discuss just how DIA can impact closed loop operations.

I like to visualize carbs and insulin as opposite effects on BGs; one upward and one downward.  I have several visuals that I typically imagine…my favorite two are crowd surfers at concerts and wet paper towels holding coins.

Imagine carbs are the hands below.  Imagine insulin is the weight of the crowd surfer.  If you had a bunch of weak little kids trying to hold up The Rock (an all fat/protein meal bolused upfront entirely)…BGs would get crushed low.  If you had a tiny little baby being held up by rambunctious steroid-filled weight lifters (underbolused slurpee)…that BG might go sailing high.

Or how about the wet paper towel is a meal and the coins are insulin dosing. Can you put too many coins suddenly on that wet paper towel such that it can’t support the weight of the coins?  Yup…low BG.  Give that towel time to dry out, get strong (carbs absorb)…then it would be able to support those coins later.

With those comparisons in mind, we can look at the geeky explanation a bit more.  Simply put, carbs make your BGs go up.  Loop used to predict the “shape” that carbs would absorb as a static value much like shown below.  You’d tell Loop the time for carb absorption, and the model said it would peak halfway through….BG impacts would look much like my hand-drawn sketch below.  (Please keep in mind these are conceptual drawings…not to any scale exactly.)

And insulin makes your BGs go down…

If you add the up and down effects together…you hope to get a fairly even final BG curve.  We’re all aware of the difficulty in lining all of this up to achieve that…some foods absorb faster than insulin kicks in (so we try to prebolus to help that), some foods absorb so slow that insulin wears off before the food is done (so we do extended boluses to help that).  If the stars aligned, you may get a fairly good match between the downs and ups…to get a fairly flat BG result.

If we take a closer look at those downward forces, the insulin effect, we can conceptualize that as an “area under the curve”.  All that drawing is a bunch of little tiny insulin effects added up together.  If that was one unit of insulin with an ISF= 30 and a DIA of 4 hours…you’d expect your BG to drop 30mg/dl over the entire 4 hours (assuming your basals are correct).

But, what would happen if you considered DIA of 2 hours?  Like I’d been doing with my omnipod?  Well, all that insulin action (aka “area under the curve”) still needs to be there, so the shape of the curve changes as a result.  Like moving play-doh into a new shape.  Since the length is cut in half, the height of that curve will necessarily get longer.  The curve become more pointy, less like a upside-down bell and more like an upside-down mountain.

In effect, BGs will still drop 30 mg/dl in both situations based on the “math” but the BGs will drop MUCH faster and stronger with the shorter DIA.

The shape of the curves didn’t make much of a difference to us when we were using omnipod because we typically only were using the omnipod’s DIA setting much later after the bolus had been given…way down near the post-2 hours, post-3 hours after a bolus had been given when the two different curves might start to look more similar again.  We were checking IOB at times well after a meal had been bolused.

Additionally, we weren’t using DIA to calculate boluses ahead of time…all the boluses were based strictly off carb ratios and MY ABILITY to guess whether Anna would go low if I gave all the carb ratio based bolus upfront.    Quick carbs…I gave all the insulin up front.  Slow carbs…ummm, let me think about how much to give now and how much to extend and for how long.  Anyone have a calculator?  My omnipod PDM never suggested  proactively “Hey Katie, if Anna is eating pizza, you may want to give that 10 units broken up as 6 units now and 4 units extended over the next 2 hours or else she’ll be low in an hour.”  Wouldn’t that have been nice?! (hint: that’s what Loop is able to do now!!!)

So why is DIA different with Loop?  Well, it matters a whole bunch now because Loop is calculating what your curve will look like as soon as you enter carbs and a carb absorption time before you bolus.  If your upward effects (carbs) are not able to keep up with the downward effects (insulin), Loop is going worry about you going below your target BG.  It wants you safe.  If you have a short DIA, the chances increase that your Loop will think that the insulin will overpower the carbs early in a meal and you’ll have a low sag in BGs before carbs can catch up. (because hey…all that orange “area under the curve” has been crunched up into the front part!)

So, when Loop does its number crunching and sees that low BG sag…Loop’s checking whether that low is “low enough” to take you below your target BG.  If that low is low enough, Loop will shave off some of your recommended bolus upfront from meal.  How much?  JUST ENOUGH to keep your predicted BG from going below your target anytime after you bolus.

If you’re starting the meal near your target BG, you’re likely to see a prediction line something like the graph below after you use the recommended bolus from Loop.  And you will scratch your head and say “WHAT THE HECK IS GOING ON?”  Why would Loop SHOW that you’re going to be going high just after giving a meal bolus and not suggest more?  (some people may even take matters into their own hands and say “hey, it shorted me on a bolus…it should’ve been offering 6 units and only  recommended 4 units!”  And you’ll shortly find that if you manually change it to deliver 6 units, you’ll find Loop suspending you quickly afterwards)

BUT, take a pause and think about the situation.  What you aren’t seeing is that Loop is offering that amount of bolus to keep you from going low early…before carbs can catch up.  Based on the meal specs (carbs and carb absorption time) you entered and the DIA you are using, Loop is helping you know that an extended bolus is a good idea!  Don’t worry, Loop still knows about the upward carbs…it hasn’t forgotten about them at all.  In fact, it is literally SHOWING you that it has not forgotten about those carbs that still need insulin.  Loop will make up the remaining bolus needed through high temp basals as soon as the predicted BGs aren’t showing you’ll go below target.

Isn’t that awesome?!  In the pre-Loop days, you’d have to recognize the meal needed an extended/dual wave bolus, do some guessing and memory games, watch the CGM to help decide when it was safe to give more insulin.  Now with Loop, you tell it “hey this is a kind of long slow meal” and it does the work of helping you extend the bolus.

The problem comes if you are using too short of a DIA…you’ll regularly get boluses that are lower than you’d expect (or likely want) because Loop is predicting a significant downward insulin effect early in the meal.  Going back to the simple models, you are telling Loop that you have a wet paper towel (slow carb meal with weak upward support) but want to drop a huge stack of coins immediately.  Loop is telling you to “hey, don’t drop an huge stack of coins on that wet paper towel right away…drop a few coins, wait for the towel to dry out a bit and you’ll be able to add more later safely.”

All of this was to demonstrate the not-so-trivial weight that DIA has in your Looping.  If you set that DIA too short, you’re not just going to see it in IOB calculations, you’re also going to be having boluses and predicted BG curves that aren’t realistic.  Looping in those situations will be less than optimal and you’ll likely feel frustrated.  Out of all the variables that are YDMV (your diabetes may vary) such as basal rates, ISF, and carb ratios…DIA is the LEAST person-specific variable and most likely to be uniform across the population.  DIA is more dependent on the type of insulin being used rather than the person using it.

So I encourage you to set your DIA realistic for the insulin type you are using, and check if your other YDMV variables might need tweaking as a result of changing your DIA.  The work you put into getting those variables more realistic will be rewarded with a much easier bolusing experience.

We’ve regularly been using this “fake extended bolus” technique on Loop now for several weeks and it has been nothing short of remarkable.  The new dynamic carbs model is better able to adjust the insulin delivery (downward pressure) to match observed carb absorption (upward pressure) rather than leaving the upward pressure as a fixed curve.  We have had nearly half a dozen meals over 120g carbs each (donuts, Chinese food, spaghetti) and given single boluses upfront.  Just a single bolus.  I did not calculate or guess how much of the 120g I should bolus for vs try to split bolus for later.  I just told Loop that it was a long meal, took the recommended bolus, and then we walked away to let Loop handle the remaining decisions.  The results have been great.  Very large carb meals peaking between 150-180 mg/dl, no lows, and smooth landings.  Something that used to take a lot of effort and attention has been reduced to a reliable, less stress interaction.

On the left, donuts…large maple bar, large chocolate bar.  Single bolus, Loop calculated…high of about 125mg/dl using a carb absorption time of 2 hours.  On the right, big bowl of spaghetti using carb absorption time of 4 hours.  High of 173 mg/dl, single bolus given, Loop calculated…let Loop do the rest.

For meals that are quicker absorption (where DIA is not an issue because the carbs come in fast enough), Loop functions just like it did before…the full bolus is given upfront and Loop picks up the slop around the messy edges of real life.  But for these big, long meals…if you get your DIA well set, the experience can be one of the most significant reliefs to your t1d burden in a long time.

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A few side notes:

• To fully take advantage of the “fake extended bolus” technique, I did have to increase our max basal rate so that the extended bolus could be delivered in a reasonable time to help control BG spikes later in meal.  It took me some time to feel comfortable raising the max basal rate, since the previous carb absorption model was not forgiving at all…we’d kept the max basal rate fairly restricted to prevent unwanted high temping for quickly rising BGs after a meal.  Our previous max basal rate was 3 u/hr, and now it is 10 u/hr.  Anna’s regular basal rate on average is about 1 u/hr.
• OpenAPS also uses DIA in calculating your predicted BG curves.  So, while the discussion above is mostly Loop specific, there are many parts that apply to OpenAPS as well.  If you are frustrated and wondering “why is my rig suspending basals so much?”, check if OpenAPS is predicting low BGs before your meal would be done…and ask yourself is it possible that the low BG prediction is due to a DIA set too low for the carb absorption being observed?
• If you prebolus, make sure you forward-timestamp the carbs when you enter them in the Loop.  That helps Loop better line up the upward and downward curve peaks…and therefore you’ll get a better bolus recommendation upfront.
• Loop’s Dynamic Carb Absorption model takes your entered carb absorption time and multiplies it by 1.5x as a starting point for its model.  This helps Loop be able to anticipate later carbs (past DIA) but not bolus for them upfront where a low would be more likely otherwise.  This multiplier has been working well for us.  Loop’s dynamic absorption has been able to adjust on-the-fly to situations where the carb absorption was not like we originally anticipated (because hey…that’s life with diabetes).
• When we started on DCA, we were using 4 hours DIA.  We moved up to 4.5 hours and now are finally pretty pleased at 5 hours.  Our landings from the peak of a meal are more predictably coming in at target at 5 hours vs 4.
• We still have a growing, hormonal teenager.  We still have to adjust basals regularly during the month.  Our good experiences on Loop still require us to be aware that diabetes presents ever-moving YDMV variables that we need to tweak.  But, it’s easier to be less emotional about that work when the meal bolusing has been made suddenly easier.  Diabetes feels a little lighter on our shoulders.

 

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.

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

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!

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?

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.

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.

 

 

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.

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.

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.

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.

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.

The first thing the nurses did was take a blood sample from Anna to test her for diabetic ketoacidosis (DKA).  As they explained it to us at the time, “If she has high enough blood sugars and ketones present, her blood could become acidic and low pH.  If she’s in DKA, she will need a slow infusion of insulin through an IV.  If she’s not in DKA, we can just do a shot of insulin.”  Anna and I looked at each other…neither sounded like good options, but clearly they thought the shot sounded just fantastic.

And then they asked Anna for a urine sample.  Poor girl, her Spring Break just kept getting worse.  She could not believe they wanted her to pee into a pan, save it, and just leave it there in the bathroom.  She was horrified at the thought that someone’s job involved handling pee.  She felt awfully guilty for the trouble she was causing for the nurses.

About 30 minutes later, the Doctor came back to tell us she wasn’t in DKA and Anna got her first shot of insulin.  The doctor then proceeded to ask about our family history, whether she’d been sick recently, and a bunch of info about all the prescriptions she was calling in for us to pick up at the pharmacy before we got discharged.

That first batch of prescriptions is no joke.  Blood test strips, ketone test strips, glucagon emergency shots, alcohol wipes, syringes, rapid insulin, long-action insulin, medical waste container, lancets, and blood glucose meter.  I felt like I’d just been punked…this couldn’t all be necessary.  Could it?

In the hospital, it got old really quickly.  Not much rest, not much insight on the details of diabetes management.  We had a dietician, social worker, doctor, nurse all come in and say basically the exact same thing that the other one before had said.  “Count your carbs, give insulin.”  I asked a lot of questions about the details beyond COUNT YOUR CARBS, but the answers were vague and weren’t given with a whole lot of confidence behind them.  Do we have to limit the carbs in a meal?  No, not necessarily.  How many carbs per meal should we aim for? Umm, 80 grams or whatever you feel comfortable with.  What will exercise do to her?  It depends.  Depends on what?  Lots of things.  How often should we be testing her blood sugar?  Before meals, before bedtime, and any other time that seems like you might need it.

Anna learned how to prepare her own insulin doses, and I learned how to do the injections.  Unfortunately for Anna, she also had her braces tightened the same day she was diagnosed (not a good day at all)…so it took awhile before the hospital food services could deliver food that was soft enough for her to eat.  Oddly, the meal was delivered with a note on it that gave the carbs in “exchanges” vs. “grams”.  We weren’t taught exchanges, didn’t know how to dose those, and had to google the carb count of the food while in the hospital for diabetes.  Seems strange, right?  You’d think hospital food services would be up-to-date on the latest techniques in carb counting.

I grew frustrated fast.  It was an unsophisticated education complete with a Pink Panther “welcome to type 1 diabetes” book that was supposed to really make me reassured?  We were given a carb ratio (1:20), lantus dose (8 units daily), and given an appointment at the nearest pediatric endocrinologist (4 hours away at Stanford Diabetes Clinic) in two days to finish our education.  I decided that while the hospital staff was kind and caring, my real diabetes education was likely going to have to wait until Stanford.

We only spent 22 hours in the hospital.  You couldn’t get me out fast enough.    Anna wanted the comfort of home and her own bed.  I was eager for the answers.  I’m an engineer…I needed more certainty and clarity.

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For the record, if you’re reading this while sitting in the hospital while your loved one is being treated for new onset type 1 diabetes, here’s what I recommend you check into.

1. Choose a pediatric endocrinologist that believes in early continuous glucose monitoring (CGM) and insulin pump use.  Some endos prefer to have kids wait for a year before allowing them on an insulin pump.  This is straight-up bull sh!#.  If your insurance company has a 6-month waiting period, I suppose that might be a consideration…but don’t wait beyond that.  Having an insulin pump and CGM made all the difference for us adjusting back to an active, normal life again.  Even if you choose to stay on injections, having a pump on a shelf ready-to-go when you are ready is smart planning.  I’d have been furious if we were arbitrarily told we had to wait a year for a pump.
2. Consider asking your hospital doctor or endo to prescribe insulin pens vs. vials of insulin.  Insulin pen needles (vs syringes) are much smaller and less intimidating for kids.  We also enjoy the portability of pens, they fit easily into purses and are less “obvious” than syringes if you want to avoid public stares when you have to bolus.  If possible, depending on your diabetic’s needs, ask for half-unit pens if they are very insulin sensitive.
3. Buy the book Think Like a Pancreas as soon as you can.  You’ll be better educated, feel empowered, and have a good reference when the numbers aren’t what you’d expect.  It will help you understand what your endo is doing when he/she makes insulin adjustments and why.
4. Breathe.  As often as you can, nice deep breaths.  This will be ok.