Unhelpful

I am a member of a big diabetes facebook group. Due to a large overlap between T1D and celiac, it often comes up. When someone asks a question in regards to the interplay between the two, in general responses are helpful and informative. But once in a while I see things that really rub me the wrong way.

Cue to about a week ago, when a parent posted about their 6-year-old T1, who was very recently diagnosed with Celiac. They said that since going gluten-free, kid’d blood sugars have been running high and they were having a hard time managing it. They wanted to know if it was common.

The responses that followed emphasized that GF substitutions tend to be higher in carbs, which is 100% true. But the ensuing recommendation was to cut them out. Research Keto options! Eliminate processed foods! Home-made food is better anyway! When I was pregnant it was easier for me to just avoid those foods altogether!

FULL STOP

Did no one fully read the post? We have a 6-year-old kiddo who, on top of T1, just got diagnosed with Celiac. Their world got turned upside down again. They were just getting the hang of how to manage diabetes and deal with different foods and live with various limitations. Now they have to do it all over again, and your recommendation is to restrict even further?

Those people who made the comments are probably not parents of little kiddos with a double whammy of a diagnosis. And maybe not parents at all. Because parents know that it’s hard enough to feed a 6-year-old as is. With some of them, good luck if you can feed them anything other than PB&J sandwiches and goldfish crackers. And so many snacks are all about gluten. Enter diabetes, and you must start counting carbs and doing complicated math. Add celiac, and now you are also scrutinizing every label for obvious and hidden sources of gluten, you can no longer rely on a quick stop at Subway or pizza take out for when you are on the go or simply have no time or energy to make a meal. And the kiddo cannot eat so many foods, and at 6 they can barely understand why. This is hardly the time to recommend restriction.

Oh and by the way, for those with Celiac, gluten interferes with absorption of nutrients and vitamins. So when people go gluten free they start absorbing ALL the things better. And it can translate to needing more insulin than before because now more carbs are absorbed. So the first answer to this parent’s question should have been YES, this is a common occurrence after receiving a correct diagnosis and starting a gluten free diet. This is a good thing actually. It means that healing started.

As to what I would recommend, first it is to increase insulin as needed. Work with your Endo, be prepared that things may change quite a bit in the next few months. Go ahead and find replacements for favorite foods. Find foods that your kid will eat and will enjoy and that will result in the least amount of restriction possible. Give the entire family some time to adjust and adapt. Later on if you want to experiment with Keto recipes, or do a more drastic diet overhaul, go right ahead. But it’s OK to find your footing first.

While I’m at it, let me proudly re-display one of our favorite substitutions: frozen GF waffles from Trader Joe’s. Clocking in at 21.5g of carbs per waffle, compared to about 15g of their gluten-containing counterparts, they are delicious and totally bolus-worthy.

 

 

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

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.

Clueless, school health tech variety

I pegged her as clueless when she called me about my son coming into health office complaining of mild stomach pain. She tried to insist to me that because he’s had it for a couple of days, even in the absence of any fever, diarrhea, vomiting, or any other symptoms, I should take him to the doctor.

This was beginning of new school year and she was a new health tech. I didn’t like how things were unfolding from the get-go. Initially V tried to defend her. But a few days later she told me “Mom, you are right, she IS clueless.”

Turns out V stopped by the health office to get something. The following exchange occurred:

HT: I know you have diabetes, but what stage?

V: ??? I have…Type 1 Diabetes?

HT: Yes, but what stage is it?

V: ??? I am…out of honeymoon phase?

HT: But what STAGE?

V: ??? I’ve…had it for 5 years?

Was she confusing diabetes with cancer?

Thankfully it turned out that this health tech was a very temporary substitute.

Incompetence level: advanced.

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

Highabetic Rectosis

Back a few months ago, V was dealing with a lot of stubborn highs. Now, highs are no fun. V feels crappy, and hangry, and rageful. One evening, after trying to weather another episode of her 300+ BG-induced hungry rage, when she really wanted to eat something but would keep rejecting any and every carb-free or low-carb options in the utmost tantrumy fashion, I turned to internet for help. I posed a request to one of the diabetes Facebook groups I belong to: please help me find a new diabetes term of endearment that describes someone who has high BG, is really angry, emotionally volatile and unreasonable as a result, and really hungry on top of it. The community responded with great enthusiasm and some outstanding suggestions. The clear winner was highabetic rectosis: high blood sugar and acting like an asshole. I do realize the hunger is not clearly reflected in the term, but I embrace it nonetheless. And I’ve made a conscious effort to make the term a part of our diabetes vernacular, as well as expand on its meaning.

For example, highabetic rectosis can also mean T1D being an asshole and causing high BG to not budge. Usually at the most inopportune time, and despite our best efforts to beat it down.

 

 

Highabetic rectosis can alternatively be defined as feeling like ass when BG is high.

 

 

Highabetic rectosis can also mean that all low-carb and zero-carb foods taste like ass when BG is really high, because all that is desired is ALL THE CARBS!

And in yet another definition, and perhaps my favorite, highabetic rectosis means becoming a total wise ass when discussing high BG. Like when your daughter screen caps your text convo and adds this astute wise-ass comment:

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.