Where everything is gluten-free…

Nope, not some utopian world. I’m talking about Gluten-Free Expo, this year re-named as Nourished Festival.

It gives me something to look forward to in February. No offense to those who celebrate, but Valentines Day is not my thing. Couldn’t care less. And after the holiday season and then a couple of family birthdays in January, February has nothing that I’m particularly excited about.

Last year’s festival

This will be my third time going to the Fest. Last year V came with me and loved every minute of it. It’s not often that she has an opportunity to be somewhere where she can eat EVERYTHING. And we don’t have to worry about asking any questions or double checking. And for people with other allergies, this year’s Fest is going to be even easier to navigate because of better signage and ingredient/allergens indicators.

Happy sampling

Diabetes management during an event like this is tricky. We have to SWAG (scientific wild ass guess) carb count on everything. Last year we failed. V started in good range and despite what we thought was aggressive guessing and dosing still ended up with high BG. This year I expect that we will fail again. But whatever! It’s totally worth it.

I’m looking forward to discovering and sampling new gluten free products, getting new ideas and inspirations, and spending some time in a setting where EVERYTHING is gluten-free.

Join me and save 20% with code ADVANCE if you purchase tickets by 2/8/19.

Get your tickets here

DISCLAIMER: Nourished Festival is providing me with free entry. I am not compensated in any other way, nor am I asked or expected to review or promote any products or companies associated with Nourished Festival. All opinions are my own.

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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.

Dude, where’s my insulin?

When I’m at work, I rarely pick up my phone. Too many robo-calls to begin with, and if someone really needs to reach me they can either text me or leave a voice mail. I only answer if I’m expecting a phone call or if it has a potential of being really important. For example, when I see a phone number from kids’ doctors, I pick up. And when I see a phone number originating at V’s school, I also pick up.

Several weeks ago, my phone went off and I recognized that it originated from V’s school.

V: “Hi Mom, it’s me. My pod got snagged during PE, so I came to the health office to change it, but my insulin is not here.”

Me:??? What do you mean it’s not there? It’s supposed to be in the fridge.

V: I know, but it’s not there. We looked everywhere. We tried to tape the pod down but it’s not working well.

Duuuuuuude. WTF?

V keeps a box with back-up pump supplies and a vial of insulin in the fridge in the health office in school because things happen. Pods fail sometimes, or they get ripped off. A brand-new vial of insulin was placed in the refrigerator. It was in the box. It had V’s name on it. Who would remove it and WHY?

I asked V to keep looking. This was around lunchtime. Me and my husband were both about 30 minutes away from school. That particular day I had a very busy schedule and could not leave work save a big emergency. I called my hubby and put him on standby, just in case.

V called back. The insulin was nowhere to be found. And lucky her, she’s the only diabetic at school right now, so they did not have anyone else’s insulin there either. V said that she thought the cannula was still in, and that she’d try to tape the pod again and make it work another few hours before school was over. We left at that, she gave herself a bolus, and I asked her to keep me posted.

In the next hour, her BG continued climb up – not an encouraging sign. V sent me a photo of her taped up pod and it was not pretty. Much as I did not want to admit game was over, it was sinking in.

I called my hubby again. Luckily he was able to leave work early, picked V up from school and took her home. Needless to say we were upset. But it’s never happened before. And we really like and have a good relationship with the health tech. So a simple email was in order:

Heath tech responded promptly

Good! I would want administration to know.

What do I think about putting a vial of insulin in a clearly marked container? Sure! This is what V delivered to health office on Monday.

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

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!