T1D and GF 101

V has a new math teacher this year. When my husband and I introduced ourselves at curriculum night in the beginning of the year, we mainly wanted to address some concerns we had regarding V’s learning. The teacher, however, had some really basic questions about V’s medical stuff and whether she would be sick a lot and miss many school days. It was clear that no one informed her of anything, even though V has a 504 plan and it should have been reviewed with her. When we got home, I sat down and composed a T1D and GF 101 email to help her better understand V’s needs.

Hello Ms. W,

It was nice meeting you this evening at curriculum night. We are hoping that this year will go better for V than last one. She did struggle with some material but also a big problem was her procrastination and lack of organization. We will monitor her grades and progress more closely this year and please let us know if you have any suggestions/recommendations on how to better support her.

In regards to her medical issues, let me just briefly explain them to you, as I see the school had done an outstanding job of giving you this important info. /sarcasm. 🙂

V has Type 1 Diabetes – an autoimmune disorder where the pancreas stops producing insulin. There is no known cause and there is no cure. She needs background insulin 24/7, as well as additional doses for any foods containing carbohydrates. She wears two devices. One is an insulin pump, another one is a continuous blood glucose monitor. Her pump (also called a pod) has a remote control which she uses to make dosing adjustments, give herself mealtime insulin, etc. While the pump delivers pre-programmed background insulin dosage 24/7, it does not “think” or “act” on its own, so V needs to enter her blood glucose and carbs data into the remote whenever she needs to make adjustments or deliver insulin dosage. She rotates her pump site every 2-3 days. She likes to wear pods her arms and legs, so they are often visible. Normally pump will be pretty silent, although you may hear quiet clicking form time to time  – it means insulin is being delivered. Once in a while, it may malfunction and then it will make quite the noise! We lovingly refer to it as “the song of its people.” Hopefully it won’t happen during class. At any rate, V has all the back-up equipment on her and in the health office and can address issues quickly and independently, you do not need to worry about it.

The other device – continuous blood glucose monitor (Dexcom), she usually wears where it is concealed by her clothing. It measures her blood glucose in real time and transmits the data to the app on her phone. This is the device that may make noise sometimes, to alert V if her blood glucose is low or high. If you hear police sirens or really loud beeps, it’s probably V and, for better or worse, no one is getting arrested. I’m sure she already explained to you that she may need to use her phone in class to monitor blood sugar. Dexcom gives V a break from having to poke her fingers to know her blood sugar, and a huge peace of mind because it alerts her to high and low blood sugars, so she can take quick action and stabilize it.

The funny thing is, managing diabetes requires a LOT of math. V should be an expert in ratios, division, multiplication, fractions, percentages, proportions, and some other math functions.  “Should” being the operative word here. As I’m typing this email, she’s reminding me “I suck at math, I hate math!” Followed by “I don’t hate math, I struggle in math.” Followed by ” I hope to get better.” Yes, there is hope!

V has a 504 plan in place. It contains some pretty basic accommodations, such as being able to use her phone during class ONLY for diabetes management purposes, testing her blood sugar before exams, being able to drink and eat and use the restroom as needed as it’s part of managing diabetes, etc. I will make a copy for you over the weekend. V is fully independent in managing diabetes and she is generally responsible and takes good care of herself.

V has another medical condition – Celiac – also an autoimmune disorder (because if you have one, why not have two! 😊 ), where her body cannot digest gluten – a protein found in wheat, barley and malt.  Ingesting any gluten leads to damage to the lining of small intestine. She is on a strict gluten free diet, and she is very good about sticking to it, reading labels, and being very careful to avoid gluten.

V can eat anything as long as it does not contain gluten (or poison 😊), including candy. She just needs to give herself insulin to cover the carbs.

Neither her devices, nor diabetes, nor Celiac, should interfere with attendance. V does tend to get sick a little more than average, and it may take her a little longer to recover from illness,  but it is not excessive. If for some reason we are facing unforeseen medical complications that may be impacting either her attendance or ability to do schoolwork, we will communicate it to you ASAP.

Thank you for taking the time to read the info and hopefully it is helpful. Please feel free to reach out to us if you have any questions or concerns or need more information/explanation.

We look forward to a great school year!

Respectfully,

Polina B

The teacher responded the next day thanking me for both the info and the sarcasm about not being informed. And now that I’ve written the letter, I will keep it handy for any other occasion when a basic explanation is in order.

Back to school: First day of 8th and 5th

Advertisements

Diabetes Math

Here’s a little math problem for you. Your 13-year-old T1 has been sick with a nasty cold for a couple of days. At 2 AM you wake up to Dexcom alarm and see that your T1’s BG is 275 and trending up. You get up to give her a correction bolus. The pump says you should give 4 units of insulin for correction to bring BG to target of 100. You also notice that there are 17 units of insulin left in the pod. Your T1’s basal rate of insulin is 2 units per hour and you will not be able to change the pod until about 7:30 AM. You have ruled out a site failure, determining that it is working more or less OK. You are able to administer insulin correction via the pump and/or via a shot. How much insulin do you give her? How do you deliver it? For a bonus question, how long will it take you to fall back asleep after you are done?

If you quickly run the numbers in your head, it looks relatively simple. 17 units of insulin in the pod minus 11 units needed to last until 7:30 AM minus 4 units recommended for correction = 2 units left to spare. Administer a 4 unit correction via a pump. Fall back asleep within next 15 minutes.

Nice try. You get an F in diabetes math. If you administer a quick 4-unit correction, you could probably get back to sleep in 15 minutes. However, you will be woken up again very soon because the BG will continue to climb up, the alarms will continue to blare, and you will have to do this all over again. Diabetes math is far more complicated than what it seems.

The remarkable thing about our little math problem is that every bit of information I provided is relevant and changes the equation. So let’s do it together.

Age and sickness are important. Teenage hormones are not kind to T1D and can lead to heightened insulin needs, sometimes unpredictably. Illness also causes BG to go up. Both factors, combined with the fact that due to illness V was sedentary for a couple of days, lead to increased insulin resistance. The pump is not programmed to change its calculations based on these constantly moving targets. It recommends the amount of insulin needed based on preset ratios and estimated active insulin remaining (AKA IOB or Insulin Onboard). So when you see a BG of 275 and trending up, under these circumstances you should think about how much more insulin it’s likely going to take to bring V into a better range. This knowledge only comes with experience and trial and error.

I know from experience that in this scenario 4 units are completely insufficient. I also know from experience that when V’s BG is over 250, insulin resistance kicks in like there’s no tomorrow. And let’s not forget that her illness, hormones and lack of activity are also contributing to insulin resistance. This is time to dose aggressively. Not only will you need to give a much bigger correction, you should also increase basal insulin for a couple of hours. How much? Once again, informed by trial and error data, we need to jack it up to 200%. If you do the math again, you will quickly realize that 17 units left in pump are not enough.

Here is the answer. Give a correction of 7 units via a shot. Not only does it save you insulin in the pod, it delivers it more quickly and bypasses any potential absorption issues with pump site. The extra 3 units over the recommended 4 will account for insulin resistance and for the fact that by the time insulin starts working V’s BG will already be around 300. Then, increase temp basal rate by 100% (to 200% total) for 2.5 hours.  Three hours would be ideal, but there is not enough insulin left in the pod. 4 units for 2.5 hrs, plus 2 units per remaining 3 hrs equals 16 units. V will make it to 7:30 AM with only 1 unit to spare.

Mind you that you do this math in your head at 2 AM because you can do this shit like a boss. Then you go downstairs to get insulin vial and syringe. You go back up and turn on the lights. You are fully awake now, and you better be fully awake because you have to draw the inulin and do the shot. You go back to bed hoping that your math is not off by too much. Experience tells you that in this particular scenario you may not have given enough insulin (believe me!). Forget target BG of 100. Due to illness you haven’t seen it for a few days. Your goal is that 1. BG will start trending down instead of up and 2. at 7 AM V will wake up with BG closer to 200 than 300. But it’s 2 fucking AM and you need to go back to sleep. Which, to answer the bonus question, takes you at least one hour.

When you wake up in the morning, while you may be feeling tired, foggy and grumpy, you are rewarded with an A in diabetes math.

BG peaked at 300 around 3 AM and went down to 182 by 6:45 PM. GOALS MET!

Sometimes we nail it…

…and sometimes we don’t.

Thanksgiving yesterday was ok diabetes-wise, but definitely not on the “nail it” category. V was low around lunchtime. She ended up over-correcting and/or over bolusing. And we were too busy to pay any attention to her BG in the afternoon. So when we were about to sit down for dinner, we realized that her BG was less than optimal, in the 200’s. We made the best guess in carbs and she bolused. She continued to go up past 300, then began trending down. When it was time for dessert we gave her a shot. And we over-did it. She was dropping, dropping, dropping. And so she had some juice and a bite of pie and we suspended her insulin delivery. And…you guessed it… we over-did it again. We were up a couple of times at night dealing with Dexcom alarms and administering corrections for high BG.

Oh well. T1D is a jerk and doesn’t care about holidays. On the upside, because she was having fun with friends, the glucocoaster didn’t seem to affect her much. And she ate everything she wanted. So FU T1D.

Thanksgiving glucocoaster ride

Unicorn

Unicorn is another important diabetes term of endearment with a couple of meanings. First definition is a BG of 100. Second definition is when the CGM and BG readings match perfectly. Once upon a time we caught an extremely rare double unicorn!

And just because, here is a picture of our dogs wearing a unicorn headband. They were not pleased.

SWAG brag

SWAG is a very important Diabetes term of endearment. It means Scientific Wild Ass Guess and it is used when there is no carb info available and you have to make your best guess.

So, when you take your T1 kiddo for some ice cream that was her promised reward for an outstanding swim meet performance, but then you realize that her BG is not optimal for ice cream…

…you take her anyway because a promise is a promise. And then she orders a milk shake, which is OK because a promise is a promise. So you SWAG the carbs at 100 g. (!) And she needs to give herself a shot because it’s a shit load of insulin and there’s not enough in the pump at the moment. Besides, a shot is more effective because she’s high already.

She does the shot without complaining and enjoys the hell out of her shake. But you still second-guess yourself and wonder if you should have given even more insulin.

Then a couple of hours later you ask her to check BG and BAM 💥

NAILED IT!

Another sleepover story in screencaps

Once upon a time, on a lovely September day, V went to her friend’s house for sleepover. We made sure to put a new Dexcom sensor on a few hrs prior so that it would be working well and give us a peace of mind. V went to a sleepover and everything was perfect and everyone slept soundly and lived happily ever after…

Hahahahahahaha. Right.

Mere couple of hours into the evening, and following some pool time, I get this text

Great. We didn’t pack an extra sensor because it was not supposed to just fall off. No Dexcom, no remote monitoring possible, no easy access to BG data and trends. OK, time for Plan B!

Then it was time to figure out night time strategy. If Dexcom was working, we could rely on it to alert to any issues at night. Alas, no such luxury.

Don’t you love it when you have to ask your 13-year old to wake up at 3 AM to check her BG? I felt that this occasion called for some serious sarcasm.

And back to business…

Seriously, whyyyyyy?

Promptly at 2 AM…

At least things were more or less on track. Luckily no more checks or wake-ups were needed.

When we finally spoke in the morning, it was alright…

The End