My Pride is Leaking

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Brian and Catherine had three medical appointments this week. I’m picking up the pieces from a really intense new-biz week and the flu last week at work. And Sarah started a new school. In comparison to last, this week has seemed relaxing though.

One of the appointments Brian and Catherine had was to see our neurologist at Kennedy Krieger. Catherine’s been having more seizures and he finally suggested medication on top of the ketogenic diet. Catherine’s had 10 big seizures that required Diastat this year so far. Last year, her most ever, she had 13. So, at this pace, we’re poised to blow past that number by a lot. To medicate or not medicate? That is the question.

I hate the thought of Catherine on seizure medication. This is going to sound weird – and my apologies to any parent who has a child on seizure medication – but I have a confession to make. It’s a bizarre source of pride for me that she’s not on seizure medication. I don’t even know the analogue to that in the normal world. Maybe it’s being proud of your daughter for not being pregnant in high school? I just know whenever the docs and nurses do an intake and we tell them she has seizures this is how the conversation goes:

What medication does she take for the seizures?

Diastat for her big ones.

Uh-huh. And what else?

Nothing.

They usually look up from a clipboard or a computer screen at this point. Nothing?

That’s right. She’s on the ketogenic diet and we don’t give her regular seizure medications.

And that’s when the little tiny feeling of pride leaks out of me. Weird, huh?

So, now, Brian and I are supposed to be deciding whether to put Catherine on Kepra or not. And that’s bizarre, too. It wasn’t that long ago in medicine that doctors simply prescribed and the patient (or the patient’s parents) just did it. Not much “thinking” to be done. Now, everything is a decision in partnership. And that makes it harder on us.

I just watched a TED talk about this very dilemma while I was sick. Baba Shiv, the speaker in this video, studies how we make the choices we do. He speaks about the energy it takes to heal a body (it was cancer in this TED talk video) and how that can be disrupted with the energy it takes to decide aspects of your treatment. Studies have shown that too many choices make us less happy and Shiv posits that this can be true in medical choices as well. Watching this video, and using it as a foundation, one might argue we should just put her on the Kepra.

I sit for a moment with that thought, and I still can’t bear it.

I guess my pride is leaking more than I realized.

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2 Comments

  1. May I ask who you are working with on the ketogenic diet, and which neuro you see at KKI?

    My son’s neurologist is at KKI too. When I asked about the ketogenic diet, she referred us to Dr. Kossoff at JH. He says that, if we do the diet, we will have to transfer all of his neurology care to that office for as long as he is on the diet. I would really like to keep as many of his specialists at KKI as possible. Any suggestions?

    Thanks.

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