(Second) Guessing Game

by Leighann on January 21, 2010

My daughter climbed into bed with me in the morning and we turned on PBS.

She asked if the next day was pump change day or if it was in two days. She followed with:

I don’t want to have diabetes.

My life was just fine when I had injections. I don’t want the pump!

What do you say to that? What can you say?

I can’t change that you have diabetes, but trust me, it’s better with the pump.

She sighed in exasperation and rolled over, tucking herself under the blanket to watch the characters on the screen as they spelled the words GROWN UP.

That was the end of that.

Ironically, the laptop was perched on my knees and I was reading Lee Ann’s post Another Round of the Blame Game on The Butter Compartment.

And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?

Scott‘s comment to Lee Ann was particularly pertinent given the guessing-game-insulin-roulette we played over night.

If anyTHING is to blame, it is not the diabetes, but the overly complex treatment protocol. To succeed with intensive therapy, a patient with type 1 diabetes must take 3+ daily injections of insulin (or pump therapy), 4+ daily blood glucose tests, and follow dietary and activity instructions, all of which is subject to change without notice and without warning at any point in time.

That’s right, treatment protocol constantly changes and what has been working fine can suddenly stop working. And this is exactly what we experienced the night before and into the morning leading to my daughter’s proclamation that she doesn’t want to be diabetic.

Bedtime High

Q is usually in range at bedtime with the exception of pump change days. Sometimes, but not always her blood sugar is elevated at bedtime on those days. Since these highs are erratic, we can’t give a preemptive extra bolus before the change and risk a low. We are working on this by being more aggressive if she’s even the slightest bit high at dinnertime.

But her recent bedtime number of 441 was completely out of the blue and unexpected.

We literally checked her four times with two different meters to make sure it was correct.

(Which brings up a frustrating issue that the same meter can vary by a good 20 to 30 points.)

We checked for alarms we made sure we actually bolused for dinner.

I had no idea why she was this high. She was feeling just fine.

So what’s the next step? Check for ketones.

If there’s one axiom I’ve learned it’s that:

You can lead a diabetic child to ketone strips, but you can’t make her pee.

Of course part of the bedtime routine includes going potty, something she had done while getting changed into PJ’s before her blood sugar check.

She tried going again, but just couldn’t. So what do you do? She didn’t seem sick. But sometimes her BG rises before she shows the first symptoms of illness.

I looked at our chart with the appropriate correction for a blood sugar level in the 400’s. Three units is a lot of insulin for her, especially at bedtime.

So we played insulin roulette: we guessed and gave her 2 units.

Now I am in no way advising this because after I gave her the bolus and a no carb snack and sent her to bed, I totally second-guessed myself! I was so afraid that she would go too low.

I asked my husband to check on her over night and said that if she wasn’t coming down in a couple of hours that we would need to wake her and change her pump and if she was going too low, we would need to wake her for a snack.

10:30 pm: 321

5:00 am: 136

By breakfast time, which was a little late because it was a lazy Saturday morning, she was 79.

Disaster averted. Back in range the rest of the day. No need for an early pump change.

(Update: We now use the blood ketone meter and test for ketones a lot more frequently than we ever did with the urine test strips.)

Back to Injections

Since that morning she has been insisting that she does not want the pump anymore. She says that injections are better; that she was so used to them that they didn’t hurt.

I try to give her good reasons, but she’s just not agreeable.

I say that it’s quicker; I remind her that she has more freedom at birthday parties. I say that even if she wanted to have injections that we don’t have the supplies any more.

She told me that injections are better for the planet and I tell her we use less stuff now. (Only evidenced by the fact that our sharps container fills less quickly, though the pump produces it’s own set of waste.)

She says that if we do injections then we wouldn’t have to “use all that pig stuff to make medicine.” (A while ago someone was talking about the local Kiss-A-Pig Gala and we explained that insulin used to be made from pigs.) I tell her that both ways use insulin and that they make it in a lab now.

I tell her that we are not going back.

*Please follow the protocol prescribed by your care team to treat high or low blood sugar.

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{ 13 comments… read them below or add one }

1 Rachel January 21, 2010 at 7:05 am

Oh Tristan has often told us that he wanted to go back to shots too…. not the little shots, the big shots (the pen). We just told him that unfortunately that wasn’t an option and we remind him that with the pump he doesn’t have to have an injection every time he eats or drinks (carbs) something. Sometimes he agrees….. sometimes he doesn’t LOL 🙂

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2 Mike LeBlanc January 21, 2010 at 7:25 am

Ah, the guessing game. Bedtime and middle of the night corrections at our house are also often done instinctively rather than by using a correction factor. Sometimes the math just gives us an answer that just doesn’t seem right.

For Ketones, we use the Precision Xtra meter. It uses strips (like those used to mesure blood glucose) and a drop of blood. Much easier than urine in my opinion.

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3 Frances January 21, 2010 at 9:12 am

Man, sometimes I think we are living the same life! Guess in a way we are! My daughter HATES set changes. She has never said she wants to go back to shots, but says she hates Diabetes every time we have to change her set.

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4 Jen January 21, 2010 at 9:42 am

Precision Xtra! I second what Mike said. The strips are expensive but SO worth it when you have a little one who can’t/won’t always pee on demand. I cannot understand why everyone with a young child is not told about these/prescribed strips at diagnosis!

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5 Shamae January 21, 2010 at 10:05 am

Interesting! We have dealt with this issue with Sydney too…who I believe is close to the same age as your daughter. I think it goes back to the cliche, “the grass is always greener.” Last November we had unexplained/controlled highs and actually did go back to shots for about a month. We had forgotten how flexible the pumps is. It was a great learning experience to re-experience injections again. Thanks for this post!

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6 Wendy January 21, 2010 at 12:29 pm

GUESS GUESS GUESS…I hate this game…

Cool website 🙂 Glad to MEET you!

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7 Renata Porter January 21, 2010 at 1:11 pm

That bedtime high is a tricky one. Just as much as the bedtime low. And it changes constantly as your child gets older and has more things going on (like puberty). Keeps you on your toes, that’s for sure!

As far as the diabetes regimine, or the blame game. I have learned over the years that the quicker you put all of that aside and just accept diabetes, the quicker the kids do. My son, diagnosed a year, still gets a bit pissy on occasion. My daughter, diagnosed 12 years, just goes with the flow. And I think that has to do more with our attitude than anything.

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8 Cherise January 21, 2010 at 2:18 pm

My heart melted when I read your post:( I get tires of wearing the pump (pod) but my mind quickly changes when the thought of MDI’s fill my head. One day she’ll understand. Hugs. Keep up the good work.

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9 Amy January 21, 2010 at 7:14 pm

The Precision Xtra ketone meter is awesome…we used to use it but our insurance doesn’t cover the strips. Ketone strips it is for us, too! Jada for some reason thinks its fun to go potty on the strips…go figure! 🙂

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10 Meri January 22, 2010 at 7:01 pm

I just couldn’t imagine. My boys would never go back to shots. In fact, when we do have to give them an occasional injection, they complain WAY more then when we change their pump sites.

I just asked my 12 year old if he thought he would ever want to go back to shots. He said, “Never.” But when I told him about your daughter he was much more thoughtful in his answer. He said, “I don’t blame her, everyone likes what they like. Change is hard. I don’t think she is crazy or anything. Diabetics aren’t all the same you know…”

Man, I thought I was an empathetic person, but he gets it even more than I do. It’s eye opening to say the least.

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11 Cheryl January 25, 2010 at 8:40 am

My DD who is 10 now sometimes says she doesnt want to pump anymore. She is usually very high when she says these things. I just say this is what is best for you and our family right now, when you are a grown up you may choose your own treatment. We use the omni pod now so we dont really have this conversation anymore 🙂

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12 Scott S February 17, 2011 at 11:05 am

Have you ever done a pump vacation with Q? I am a former pump user, and while my experience is not likely to be anywhere close to hers, it might be worth seeing if you can go back to the Lantus/Humalog-Novolog-Aprida protocol for a short break if she brings the issue up again. Will her numbers be as great? Probably not, but sometimes that’s still worth dealing with to give her a pump vacation where she doesn’t have to wear it for a few days. Just thinking out loud on this one, no need to do it, but sometimes a short break is enough for a child.

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13 Leighann February 17, 2011 at 11:11 am

Scott- She actually will have fleeting moments now and then that she says she doesn’t want a pump. But I think it’s just frustration that she has diabetes, not the pump itself.

As quickly as she voices her dismay, she’s usually off doing something else and the conversation is over.

If she ever wants to take a vacation from pumping, we would consider it. But as a caregiver, the pump is so much easier.

She was telling a grown up the other day that the pump is so much better than injections!

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