Playing the diabetes card, sort of

Have you ever heard of FIRST Robotics?

Well my older son has been involved with them for years. Now that he is in college, M has begun to take an interest. She started this year with FLL, also known as First Lego League.

Now, M has hit the stage of diabetes where it is really no longer a novelty. She gets annoyed, rolls her eyes, and gets royally peeved when her father or I mention something that has to do with her diabetes.

"M, put on your shoes," for example, earns an eyeroll.

"M, did you bolus for that?" earns a sigh, and an annoyed "YES".

"M, please check your blood sugar," generally escalates into a glare and a whiny "I know. I am fine."

But at school, it's different. M is a teacher at heart, and she wants people to leave behind any of their misconceptions about diabetes.

When FIRST announced the theme of its FLL competition this year, she felt like she had something to say. The competition theme was "Body Forward", which focused on biotechnology. Each team had to focus on a body part, research problems that the body part might have, and invent new ways of solving one of the problems with that body part.

M immediately hijacked this part of the competition.

"I think we should do the pancreas, unless someone else has a better idea."

No one did. They were all focused on building the robot and programming it. M focused on the research project with a couple of younger recruits from her team. They came back with a report.

"The pancreas basically has two problems: diabetes and cancer. I want to try to solve the diabetes problem, unless someone has a better idea."

No one did. The small team of researchers now became a small team of inventors, inventing a patch to administer Lantus to the body, much like a nicotine patch administers nicotine. They drew a picture of a prototype, they created fliers to explain how it work and what problems it would solve for diabetics.

Then they created a skit explaining the problem (diabetes) and the solution (the "Lantapatch") to present to a panel of judges.

I had not seen the skit. I tried to get a look at it, but received one (or more) of the aforementioned glares. During the competition, however, I was permitted to watch alongside the judges.

Opening scene: girl in class talking to friend. Girls feels woozy and passes out. Girl goes to hospital and learns that she has diabetes. Girl is told to measure food and inject herself several times per day. But wait! There is a new prototype of an experimental treatment called the "Lantapatch". It could save girl at least one injection per day. Does Girl want to try it?

One of the judges started tearing up. She knew that M had diabetes, and was moved that the team would work on solving this problem.

Then something happened that I didn't expect. M acted as the spokesperson for the group, explaining where the team got the idea, and that she, the spokesperson, had Type 1 diabetes. She explained how she treats it. She explained more about diabetes than about the project itself. In a strong, clear voice.

She was beautiful. And I was proud.

"...and then we learned that Dean Kamen, founder of FIRST, invented the insulin pump, so we decided that we had to study the pancreas after all."

Her team was a rookie team, and didn't win any part of the competition, but I heard from reliable sources that they made a strong showing. M's influence was the judge's topic of choice at lunch.

Would it have been, if M hadn't actually had diabetes? Would the judges have paid any attention to the idea that the team proposed? I don't know. But if she can act as an advocate for herself and her diabetes, I don't care.

By the way, the Lantapatch hasn't been invented yet. But who knows? Maybe it will be soon.

"Do I share this information? It depends on my mood." - M

Adjustments

We are continuing to struggle with high bg levels. It is getting better, but there have had to be many little adjustments over the past few days. After a startling 2:00 am low of 29, we were anxious about raising M's Lantus intake any time soon.

For the first time in months, I sent a lengthy e-mail to M's Diabetes Nurse Educator (DNE). These e-mails are a pain. In order that she might give us appropriate advice, we need to include the following information:

1) number of carbs M had every time she ate
2) What her bg level was each time it was tested
3) What time of day she tested her bg
4) What her carb ratio is each time she injects herself
5) What the correction factor is each time she injects herself
6) How many units of insulin she injected and what time she injected it.
7) All of this data over a minimum period of four days. A week is preferable for tracking trends.

We track all of these things in a little notebook. Then I have to transcribe them into an e-mail.

It took me over an hour to compose this e-mail.

A few hours later, I check my inbox. I got an "out of office" reply. She'll be back on X day due to a family emergency.

Doesn't she know that she is not allowed to have family emergencies?

The message also indicates who to call if we are having an urgent problem.

Well, a funny thing happened as I was transcribing all of the necessary information into the e-mail. I began noticing patterns, and began exercising a part of my brain that had been dormant for the past few months as I sat back, smugly satisfied that M had everything under control. Perhaps it wasn't quite urgent enough to call some stranger, no matter how well-educated they are.

Which part of the brain is that? The mathematical? The emotional? No. The diabetes part.

Oh, yes. There is a diabetes part of the brain, it's just that most of us have no use for it most of the time.

So, her bg is lower at night, but REALLY HIGH at morning snack, lunch, and afternoon snack. By dinner, after so many high doses of humalog, the bg has been wrestled more or less into range. In other words, its REALLY HIGH nearly all the time except at night when it sometimes is REALLY LOW.

So here's the plan: Raise the Lantus by one unit to (the obscenely high number of) 42 units. Increase the correction factor by 2 at night, thus offsetting the higher dose of Lantus. Reduce the correction at breakfast to tackle the high numbers yet to come.

We had a "good" day yesterday, with bg ranging from 87 to 205. We did have one crazy 340 mixed in there the other day, but the mystery was solved when it was revealed that M had not calculated her yogurt into her dinner carbs. 25 uncovered carbs can wreak havoc on your bg levels.

While this range is not what I am accustomed to (something like 75-165), it is much better than the 29-398 of the past weekend. We are continuing to tweak ratios and corrections as we prepare for our big "Pump discussion" with the DNE next week.

Two end notes here. I am now tracking all of M's info on a spread sheet set up by my adorable engineer husband, who likes to analyze and eliminate variables. I sent it as an attachment as I e-mailed this new info to the DNE. That was much less time consuming, and all of the data is now at my fingertips. As long as I am at my home computer, that is.

When I sent it, I got another out of office e-mail. Sadly, this one said that the DNE would not be in the office due to a death in the family. I will have to assuage my Catholic guilt for cursing her family emergencies by buying her a sympathy card.

"I hope they have sympathy cards where we are going."

Sleepless part 2

I am mad at myself.

I would like to say that I have been backing off from managing M's diabetes because, at 13, it is time for her to take on the responsibility herself.

But mostly it's because I am lazy.

I have been busy at work. Final exams are coming up. Christmas just happened. I am creating a new curriculum for a new class. My college student is home. I am the adviser for three clubs at school. The driveway needs to be shoveled just about every day. I have been managing parts of the NHAWLT website with varying degrees of success. I am running three fundraisers at the school.

All of these excuses sound valid.

But, really, I am just tired of M glaring at me when I ask to check her numbers.

I have been asking her what her numbers were during the day when I pick her up from school. She says things like, "They were pretty good."

And I ask, "Like, how pretty good?"

And she says, "Like one hundred something..."

And I accept it.

Until two days ago.

M told me that she might have to increase her Lantus dose by one unit. Her blood sugar has been a little high (what more politically correct D bloggers call "out of range").

Oh? How high?

It turns out that her blood sugar had been in the high three hundred range for days.

Good news: She knew it was time to take action, since 300 is not anywhere near okay.

Bad news: She waited a good long while before she came to that conclusion.

Let me tell you right now: Teenagers and diabetes don't mix. While I ask M to record her numbers, and while I verify her numbers, and while I ask if checked for Ketones, she is angry.

She pouts. She sulks. She glares. She gives the silent treatment.

She feels as if I am treating her like a baby. As if I am in charge of managing her diabetes.

Well, she is in charge. I am the emergency back up, and this is an emergency.

Kids need a back up. Some parents act as emergency back ups for their kids when they do poorly in school. They take away privileges, monitor their homework, take away the PS2.

But this isn't like failing a math test. Kids who fail a test then have a choice to make: study harder, and resolve to do better in the future, or say, "screw it" and decide to become a hairdresser or something else that does not require calculus.

With diabetes, your options become more limited each time you fail the test. And if you choose to say "screw it", you die a slow, painful, death.

We added the unit of Lantus. She is now up to 41 units each night. And, now, because her bg has been all over the place, I am back to doing something I haven't done since her second week of diagnosis. I am waking up in the middle of the night to check her bg.

It's only been two nights.

Night one: 76
Night two: 265

The good news is that her daytime levels yesterday were in range (D blogger code for "good").

Now if I can just find a way to get back to sleep after the 1:30 am check...

Oh cursed alarm, let me be this morning!

According to the experts - Lantus

So, in my life, the "experts" on diabetes are the ones living with it. Fortunately, I have access to a steady stream of "experts" where I work. Teaching exposes you to dozens, if not hundreds, of families every year, some of whom you get to know pretty well. Until I taught in public school, however, I had never had a student with type 1 diabetes.

It must be fate then. My first year teaching public school was the first year I had a diabetic student. It was also the year my daughter was diagnosed at the age of 11.

I remember cornering the poor student I had in my class on the day I returned from the hospital. I asked her if I might pick her brain for diabetes information. She was eager to help. Thus began my history of asking kids what their diabetic experiences are like.

Now I know an adult with whom I can speak as well. This adult is a parent of one of my students, and he has type 1 diabetes. He is a big advocate of the pump. After talking to him, and the parents of one of my students with type 1,  I am for the first time considering the pump option seriously.

Just a note: M has been considering seriously for much longer.

For those of you with only a rudimentary understanding of D-life, the insulin pump is a device that looks like a pager or an ipod. It holds a reservoir of insulin, and has a little computer in it. It also has tubing that extends from the device to a port (needle-y thingy) that enters the skin. Most pumps are also accompanied by hand held remote devices that communicate with it, thus eliminating the need to take out your pump and fiddle with it.

Of course, in New England our bellies are way whiter than this.

Before getting the pump, you have to test your bg more frequently so that you and your medical professional can get a baseline about your high and low cycles. After testing and recording your bg six to ten times per day for a proscribed period, you might now consider whether the pump is right for you.

This is where it gets tricky.

All of this information get plugged into your pump or your hand held device, and the pump sends a tiny dose of insulin regularly, throughout the day, through the tubing and into your skin. When you are ready to eat, you enter the number of carbs you are planning to eat into the device, and it gives you a pre measured bolus of insulin based on your carb ratio, which is how much insulin you take per carb you eat.

Now, I have read many blogs by pump users, many of whom have spoken of errors in their pump use. In all honesty, most of them have been user errors, not device errors. But still, reports of such errors make me nervous. One famous (in the D community) blogger wrote about fighting traffic in Boston to get to her specialist. When her blood sugar climbed and climbed, she couldn't figure out why. She was nervous and sweaty. When she arrived at her appointment, she learned that her tubing had separated from her port, and the sweat she felt was actually insulin dripping into her armpit, not entering under skin, thus the rise in bg.

Mishaps like this make me a little nervous. I mean, if a 30something diabetic can make these mistakes, then so can M.

I spoke to Ddad - the parent of my student who has had diabetes for 43 years. He told me that "nearly every problem people have with pumps is their own fault." He has had the pump for years, and feels much healthier. In fact, he thinks Lantus is dangerous. Lantus is the long acting basal insulin that M uses. In theory, it is supposed to keep your bg in range over a 24 hour period. That's assuming you don't eat. When it is time to eat, you have to inject the bolus, or fast-acting insulin to cover the carbs.

The fact is, however, that the Lantus doesn't really keep the bg within range. It can only do so much. The bolus given at meal time also acts as a "correction" for how far out of range you are. Thus, at each meal you have to calculate your correction factor as well.

There is some complicated math involved with M's current regimen. It involves figuring out how much insulin she needs to correct what the Lantus doesn't cover, and calculating how much insulin she needs to cover the carbs she eats. As with everyone, M has cycles of higher and lower bg, so her correction factors and carb ratios are different for every meal. Sometimes she needs to inject 2 units of insulin. Sometime she needs to inject 9.5 units of insulin. Sometimes she needs to inject more.

So why might Lantus be dangerous? I had never thought about it, but after talking to Ddad, I get it. Lantus is always in your system. You can't stop it from working for at least 24 hours. It actually may have effects for a few days, which I knew.

M, when active, is very susceptible to lows. For example, M had a bg of 140. She then ate a full lunch without taking a bolus, because she knew that she would be playing lacrosse for four hours. At the end of the fourth hour, she was looking pretty bad. We gave her some smarties and checked her bg. It was 29. for those of you not in the D world, this is very bad. I am glad she didn't pass out.

Why did this happen? Because even with the added carbs and without the bolus, M still had her dose of basal insulin in her body, doing its best to keep her bg under control. Lantus is not smart enough to stop working when you are exercising, but presumably you are smart enough to remove a pump when you won't need it.

A pump only uses fast acting insulin in constant, small doses. If you shut off your pump, or remove it, the effects of the insulin last pumped into your body continue for maybe a couple of hours, not for 24 hours or more.

The truth of Ddad's observation was clear. I hadn't considered life without basal insulin before. With M's activity level, maybe a pump would be safer.

Maybe a 29 during lacrosse season can remain a thing of the past.

Ahhh, that's more like it.

Look who else had diabetes

As a Spanish teacher, it is practically required that I be the advisor for the school's Spanish Club, which I am. One of kids in the club has Type 1. On one particular day, he had a low during our meeting. I will discuss the details of his low another time. We got him out of his low by feeding him, and made him feel better by having him drink water.

There is a parent who usually tags along for these meetings, primarily because his daughter forgets to tell him to pick her up later that day. In addition, she is a kindly daughter, who doesn't mind other kids knowing that she has parents. She does not make her father sit in the car for an hour while she is in the meeting. This parent is relatively unobtrusive, and periodically makes helpful comments or suggestions to the group about whatever project we are doing.

During my student's low, this parent seemed to have a strong handle on what was going on. He did not freak out, say unwise things, or feed into the slightly panicked feeling that some of our club members were feeling when our Type 1 friend said that he felt dizzy. Nor did he try to step in and take over.

After everyone had left the meeting, the parent and his daughter stuck around for a moment. I went in for the kill.

"May I ask who in your family has diabetes?"

Dad said, "I do."

Ah. He really is an expert.

"I've had diabetes for 43 years. I got it when I was 11."

Holy smokes! I am 43 years old. Forty-three years with diabetes sounds like a long time. What a bummer.

On the other hand, I hope M gets to have 43 years or more of healthy looking life. Without diabetes would be better, but seeing this parent makes me think the alternative might not be so bad.

Long story short, Dad has a pump. He is very grateful to have a pump. He thinks that large doses of Lantus are dangerous, and that we should work to get M on the pump right away.

This statement is a direct contradiction to what my cousin, who has Type 2, told me. He told me that the only two friends he had who used a pump are dead. He told me that I had better REALLY research the pump, because it's dangerous.

You might see how parenting a child with diabetes can be scary. Basically, you are looking for the treatment that is less likely to kill or do permanent damage to your child. It stinks.

Pump users can be pretty persuasive, especially after you pepper them with all of your well-thought-out questions. The questions that have been keeping you up at night. After speaking with this parent, and with the parent of my Type-1-low-member-of-the-Spanish-Club, I may be leaning toward the pump. M and I have an appointment with her Diabetes Nurse Educator in a few weeks. Will keep you posted.

Now it's time to pepper the DNE with questions.