Finding a new routine with diabetes

Since the diagnosis, we’ve had the hospital stay, a weird five-day ‘crash course’ at the hospital, and the return to school. They’ve all been taxing in their own right.

However, I’m mostly amazed at child number one’s (the diabetic’s) resilience as we try to find a new routine.

Diabetes isn’t easy for kids

My wife was diagnosed with type one diabetes when she was nineteen. As long as I’ve known her, she’s had it. You’d think she’d be ready for this. You think I’d be familiar with diabetes.

The thing is this: child number one is half her weight, and seems to be doubly sensitive to insulin. So, any miscalculation has much more drastic effects. Even more, his pancreas is still producing about 10% of the insulin it produced before, and he seems to react to injections — and to sugar — differently at different times of the day.

The result is that, in addition to calculating the sugar in what he eats, he also has to look up the time of day in a table, do some complicated math (multiplication and division with up two two decimal places — and he’s in third grade) and figure out how much he should inject himself.

Then he has to eat everything he planned to eat, and nothing more. That part alone seems frustratingly difficult for me at thirty-eight.

He gets some help

This isn’t to say that our poor third-grader is on his own throughout the day. We live in Germany which is a weird, medical paradise. The doctors gave him a Verordnung (an order? everyone is explicit in telling me it’s not a prescription) for a caregiver and a medical care company near the school sends someone at mealtimes.

We do the math for him, and create these tables that he only needs to learn to read together with his caregiver.

And, of course, the teachers are super supportive. Which is to say, they let him do he has to do. (But the after school care seems happy to look the other way if other kids take his snack, so there’s that.)

Constant adjustment

Part of what has been hard for us has been the reality that you start with some ‘suggested values’ for many variables — how much insulin per unit of carbs, the correct amount of carbs to eat before doing sports, how many carbs to eat to correct for low blood sugar, the amount of slow-acting insulin to inject twice a day — and then you basically do trial and error.

In the week before last, there wasn’t a single day that we didn’t adjust his ‘food factors’ and recalculate the table he needed and his caregiver used. We constantly reduced his slow-acting insulin, and we reduced the amount of insulin he needed at breakfast — completely skipping it (intentionally) one day — before feeling like we got a handle on how his own personal diabetes worked.

And, the doctors tell us, we won’t feel comfortable with it for very long before his growing body changes the way all of these things interact and we can start the experiment again.

He’s a trooper, his dad is a whiner

From time to time, he gets upset or asks when it will all be over. But, in general, he’s pretty strong about saying “I didn’t inject myself for that, I can’t eat it.” And, I’ve pointed out to him, he’s getting more sweets now than his brother and sister, but only when his blood sugar is low (and we want to avoid that in the future).

I’m the one who feels bad for him. He sits down at a meal and has to figure out what he’s going to eat. I can’t do that. I eat until everything is gone.

And, we invest a lot of time together with him, but it’s not fun time doing stuff together. It’s time in which we lecture him on where to put his stuff in school because the caregivers couldn’t find it. Or, practicing math because he has to be much better at it.

I never wanted to be a dad who made the kids’ at-home time about managing their school performance. And, indirectly, I feel myself turning into that kind of dad. And I mostly feel sorry for myself in all of this.

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The Diagnosis

The background

A few weeks ago — maybe two months — our oldest had a tick. My wife is fond of telling me that there’s a higher risk of Lyme disease in Germany than in the States, so she was watching for the signs. (Even though we found the tick and removed it.)

This blog post is named ‘the diagnosis.’ You can guess what happened next: he had Lyme disease. All the classic symptoms and a blood test. No worries: German medical care is excellent. We felt bad for him, but a three-week course of antibiotics was prescribed. I’m a big fan of the microbiome, but I’m familiar with what Lyme disease turns into, so, I don’t think we had a choice.

After a week on antibiotics — and the return to school — he began to get really, really tired. But, antibiotics and school were explanation enough, right?

It gets worse

We tried to spoil him as much as we could and counted down the days until the antibiotics were finished. The doctors had said that they could give him a note to get out of school if he got too tired, so the wife took him in for the note.

Only by chance — the note could have been a matter of course — they talked about the symptoms and the doctor asked him to pee into a cup. The way the wife tells the story, the doctor went off and, when she returned, obviously had bad news.

“What?” My wife asked?

“Diabetes.” The doctor said. “Sugar.”

My wife just sent me a photo of the referral to the hospital with the diagnosis written on it with a comment and I read it between lessons.

A lot to process

Let me be clear: I don’t feel bad for him. I don’t even feel sorry for myself (even though I tend in that direction, anyway). But, the poor guy has a lot to learn, and new habits to form. And, I’ve got quite a bit to learn along with him, as well as a set of ‘soft skills’ to help him learn his new habits, as well as the application of willpower, without adding to his current level of stress (which is high enough as it is).

I’ve benefitted from blogging about stuff here, but I’ve refrained from writing a lot about my family (I imagine teenage kids stumbling across what I write — or, worse, classmates). But, I’ve decided that I would benefit from writing about it. And, though I don’t strike up much communication via this blog, if I contact other parents of kids with diabetes… that would be okay, too.