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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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.

Flying Blind

“So, Mom, I have a question. Umm, what’s my insulin to carb ratio?”

V remained in her seat and waited for all of her carpool buddies to exit the car before asking me a little sheepishly. And confessed that she left her PDM (pump remote) at home. This was the first time in four years of pumping that she forgot to bring PDM to school, though we’ve had a number of close calls. OK, let’s problem-solve. I told her what the ratio was. She keeps insulin and syringes at the health office, so she would be able to give herself a shot to cover lunch. I reminded her that she could go off of Dexcom data (continuous blood glucose monitor.) “Umm, I left my phone with the PDM.”

Oops. Dexcom transmits readings to her phone. If her phone is at home, she has no way of knowing what her BG readings are.

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On the left is the PDM, which also acts as a BG meter. On the right is V’s phone displaying Dexcom data. When the numbers match, it’s call a Unicorn. When BG is 100 it’s also called a Unicorn. Therefore you are looking at a rare double Unicorn and it’s a thing of beauty.

So, without access to Dexcom data she’d have to test to know her BG. I was thinking hard and fast. I just happened to have a case with extra supplies with me, which had an extra meter. I found it, turned it on to test it and… Dead battery. But wait, I had an extra battery! I was standing in the school parking lot, fumbling with the battery and I could not take it out for the life of me.

“Forget it! I think you have an extra meter in the health office.” I knew for a fact that she had a meter for ketone strips. There was a good chance she had compatible blood sugar strips with it too.

I sent her off to school and hesitated for a few minutes before driving away. It was 8:40 AM and I had to be at work by 9. I could

A. Go back home, get her stuff and bring it to her, and be really late to work. OR

B. Let her go by feel and manage with supplies she had at school. It was a short day anyway, so I’d be picking her up about 4.5 hours later.

Her morning BG was in good range, her pod would continue to deliver background insulin regardless of where the PDM was, and she had supplies at the health office. She could give herself a shot to cover lunch carbs. And there were helpful staff and other resources at school, in the event something bad were to happen. I took a big breath and decided, for better or worse, to let her fly blind, and drove off to work.

At about 12 I noticed a missed phone call from a different number and a voice message. “Mom, I’m calling from my friend’s phone. There are only ketone strips here. I don’t have test strips for this meter so I can’t test.”

Well, shit.

I took out the spare meter again, and this time I was able to figure out right away how to replace the battery. It’s amazing how much better your brain works when you are not in a big hurry. I would be picking up V and her brother from school in about an hour. She could hang in there.

As I was driving to pick up, V called me again from someone else’s phone. “Yes, I got your message. I was able to replace the battery so we can test your BG when I pick you up. I am on my way. See you in a few minutes.”

When I picked up the kids, V told me that she gave herself a shot for her lunch plus an extra couple of units just in case. I pulled out the meter and reached into the spare supplies bag to get test strips except… they were not there! Murphy’s law never fails! Back to square one. I drove the carpool buddies home and then hesitated again. We would normally drive straight to piano lesson and I had no extra time to spare. I could

A. Go home first to grab V’s stuff and be very late for piano lesson. OR

B. Continue to fly blind for another hour-plus.

V was feeling OK. She ate lunch, so she was not starving. She was not experiencing any symptoms of high or low blood sugar. We had plenty of fast acting sugar with us. I took a deep breath and again, for better or worse, decided to continue flying blind.

V turned away from me looking upset. “You have no idea how stressful it is to not know what your blood sugar is! I already felt low in the morning and treated even though I didn’t know if I was actually low!” Good decision, kiddo!

I think it’s the longest she’s ever gone not having any information about her BG and going completely by feel. I do not doubt it was very stressful for her. To be honest, I was pretty nervous too, but proceeded to drive to piano lesson anyway. I have faith in V’s ability to listen to and trust her body, and lately she has been feeling both her highs and lows more consistently. And I have faith in our collective ability to deal with whatever situation may arise. If she felt low, we would treat. And if she felt high, while it’s not ideal, we could wait an hour or two before giving a correction. It would be OK.

Piano lesson was uneventful. When we got home, V immediately beelined for her PDM and tested. 60. Whew. *

“I can’t tell you how happy I am to finally test my BG!”. Not the words you hear often from a T1 tween.

File this under “lesson learned.”

Also, file this under “all is well that ends well.”

Also, file this under “go straight to D-Mom hell for being so reckless.”

*60, while considered hypoglycemia, is not necessarily a bad number for V, nor it is necessarily an indication of her BG dropping even lower. I know of at least a few T1’s who consider 60’s to be within acceptable range for them, just as I know a number of T1’s who cannot be below 70+. Sometimes we let her ride it out in the 60’s as long as she is feeling well, not trending down, not doing any physical activity, and does not have any active insulin in her system. At times she feels utterly crappy in the 60’s, and then we treat immediately regardless of circumstances. There does not seem to be any rhyme or reason. Why? Diabeetus, that’s why!

Good to go

In the past, new situations would require a more detailed explanation of T1D. My daughter has type 1 diabetes. “Here is what you should be aware of; here is what to do if she is high or low; here are the supplies; here is how to use glucagon; here is what she may need help with.”

Now that V is fully capable of handling all aspects of her diabetes care, things are different. One week before babysitting camp, I tried emailing who I thought was the right contact  to give them a heads up about V. I never got a reply and things got too busy for me to follow up. So on the day of drop off, I introduced myself to camp counselor and said this: “Just so you are aware, V has type 1 diabetes. She has all of the supplies with her and she knows what to do, she is completely independent in her care. She has her phone on her, she needs to keep it to call us if she has any questions or needs help. Please feel free to call us if you have any questions or concerns. Otherwise, she’s good to go.” The counselor asked if V had snacks for low blood sugar and I assured her that she had plenty. And that was that.

Today was back to school day. I prepared V’s supplies for health office. I like to take a minimalist approach, pack only the necessities, and refill as needed. As she is flying mostly solo, she only visits the health office if she’s unwell or runs out of supplies unexpectedly, and she always carries a glucagon and glucose tabs in her backpack.

Back up supplies, snacks and fast acting sugars will do. All fits in a relatively small box. Not pictured are a vial of back up insulin, string cheese and a couple of back up frozen gluten free meals, that go straight from our fridge/freezer to the one in health office. No letter, no flow charts, no detailed explanations.

When we arrived to school, we learned that there was a new nurse. I found her by the front gate, introduced myself and asked her where to drop off supplies. “I am V’s mom. She has type one diabetes and celiac. She’s completely independent in her care.” The nurse asked me if V was “the one with the pump” and told me she’s heard great things about her. And that a wonderful health tech who was there last year is going be there every day except Monday. Alright, this makes for a good start! I told her I’ll have V drop by and introduce herself at some point.

And that was that.

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Off to 7th and 4th grades they go. One is fake smiling. The other one is completely honest about his lack of enthusiasm. 

P.S. After V reads this post, I’m sure she can comment on how annoyed she was with the school not informing the new math teacher about her T1D, and her having to spend 10-15 minutes explaining it to her. She can also tell you how stupid diabeetus completely refused to cooperate and she fought highs all day long for no good reason. And we can also talk about our ongoing struggle of getting V to wake up to CGM alarms in the middle of the night, as it makes sleepovers more challenging.

But aside from that, she knows what to do. She’s good to go.

In appreciation of our school nurse

This is teacher’s appreciation week, and I finally got around to writing a letter to the principal and the superintendent about our wonderful nurse. Then after I sent it someone told me it’s also National Nurses Week. How timely! The letter is below, with some identifiable information redacted due to public nature of this blog.
Dear Principal and Superintendent:
During this teacher’s appreciation week, I would like to take a moment to thank our wonderful school nurse Lisa. Our daughter V is a 3rd grader at the elementary school. Last May she was diagnosed with Type 1 Diabetes and Lisa became an invaluable part of our team right away. She called us while we were still at the hospital to provide support, get all necessary information, and prepare for return to school. She provided education to V’s teachers, helped us set everything up at school, and from the first day V returned to school we felt safe and comfortable about her health and well-being there.
Lisa is very informed about Diabetes treatment and is always providing excellent care for V. However, Lisa she does so much more than checking out daughter’s blood sugar and administering insulin. She has been coordinating care with V’s doctors, educating and supporting teachers and staff, advocating for our entire family, and is a compassionate and caring friend and mentor to our daughter.  She goes above and beyond to ensure that V’s time at school is as normal and unaffected by her medical condition as possible. In January of this year V transitioned to an insulin pump, which was something Lisa has not had prior experience with. However, she was determined to learn whatever was necessary to best support our daughter. Remarkably, Lisa came (on her time during school break!) to the training at our house, and then attended pump start appointment with us a week later. When V returned to school after break with her new insulin pump, the transition was smooth and problem-free.
We are deeply appreciative of everything Lisa does for our daughter. We are extremely grateful that V has such amazing care and support at school. Without any doubt it helps her to not only manage her health but also to adapt to many difficulties, changes, restrictions, and social challenges associated with living with Type 1 Diabetes. This in turn translates into academic success and positive experience at school.
Lisa is an asset to the [elementary school] and to the school district and we would love for her to be recognized for the amazing work she does. We are copying this email to [district nurse] and would appreciate your help in directing it to other relevant district personnel.
Thank you,
T1DandGF parents