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

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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!

What you won’t see

Not all lows are created equal. Sometimes the number is ridiculous but V barely feels it. Other times she’s in the 60s but scares the crap out of me when she wakes me up with this text in the middle of the night:

And then there is a video saved in my phone that may never see the light of day. We went to dinner with V’s swim teammates, parents and coaches. SWAGed the carbs and overestimated big time. On the way out of the restaurant V started to feel really low. We walked to the car to the soundtrack of blaring Dexcom alarms. I gave V some fast acting sugar and decided to wait it out until she was stable and feeling better. It was a long one and…interesting. If you didn’t know better, you’d think that I got my 13-year-old drunk. She was silly, giddy, giggly, goofy, and decidedly not her normal self. I’ve seen her act silly during a low before but this one was something else. So, after giving her some more fast acting sugar, I turned into that parent and started recording. She was acting like a happy drunk and at the same time she was feeling utterly crappy. We sat in the car for a while until her BG stabilized and went up, and she started to act more like herself.

I’m keeping the video for our own records. We talked about the importance of being very thoughtful about ever sharing it with anyone. There is a part of me that wishes I could share it, for the purpose of educating others about how easy it may be to mistake symptoms of hypoglycemia for intoxication. There is nothing inappropriate about it, but it feels really personal. So at least for now, it’s best to keep it for our eyes only.

The “before” picture

Happy to recycle

Last night as I was organizing some drawers, I stumbled across a few folders from the hospital. In them was a bunch of info and documents from the hospitalization when V got diagnosed with T1D and from her first Endo follow up visit. I have to give it to the hospital: they pulled out all the stops and gave us a ton of info and resources. There were even flyers for medical bracelets. And there was a folder from JDRF with a welcome letter that started out with “You are not alone.” They did it everything to set us ip for success. And it was with some amusement that I looked at the records of our follow up appointment. Initial A1C: 12.3. Uncontrolled diabetes. Possible Celiac (wish that didn’t change to “definite Celiac” a couple of months later.) And at the bottom of the page, there was our first sliding scale.

Yep, like many others, we started with the sliding scale, where we had three types of insulin, mixed two of them once a day into one shot, and had to stick to a fairly rigid meal schedule both time and carbs-wise. It was ok for the first couple of months and in some ways it was actually helpful because if gave us some structure and some concrete rules to follow. It also allowed us to not need an injection at lunchtime in school, which made things simpler. But as we gained more experience in diabetes management, it started to feel more and more forced. We felt like we were feeding to V’s insulin schedule instead of giving insulin to meet V’s needs.

We ditched the sliding scale a few months after diagnosis and never looked back. And last night, after looking over those papers from 2013, I was happy to recycle them. We’ve come a long way since V’s initial diagnosis and we keep moving forward.

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.

The price of staying alive

Here is our CVS receipt for insulin. V needs it to live, plain and simple. And thanks to puberty she needs a lot of it. The retail price of each vial is over $300. Retail price for V’s 3-months supply is nearly $3000. With insurance AND discount program from Novo Nordisk, our price goes down to $75. We are very fortunate to have decent insurance. This is fucked up.

Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

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Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

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The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

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*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.