zaterdag 2 april 2011

A pretty good day!

I have to be careful. Saying something positive often means that something negative will happen the next day. So I'm just a little glad that we actually had a pretty good day today! Kalle had a good night, woke up late, was relaxed. He only had a few seizures and he was very alert.

Yesterday the neurologist finally called. Last monday I had written an email, saying that Kalle is not doing okay, that he's having more and more unacceptable seizures. The doctor agreed that three antiepileptic drugs at the same time is not a such good idea. Those drugs tend to interact with eachother, but you never really know how. He wants to keep on weaning off the Depakine (sodium valproate) and replace it with another drug (probably while we're still weaning off the Depakine). But only a few are tolerated while being on the ketogenic diet. So we'll have to choose between Lamictal and Tegretol. Again, it's choosing between two options we hate. Nothing feels good. Giving any medication to a 1 year old child feels so unnatural, so wrong. And yet, we know we don't really have a choice. Well, actually we do, but the consequence might be that Kalle would have more and more seizures.
The chance that the next medication will work properly is less than 50%, the doctor said. With every new drug we try the chance that it works gets smaller and smaller. Unfortunately lots of kids with Kalle's type of epilepsy are drug resistant. But sometimes there is that lucky shot, one drug that actually does work. It's too early to stop trying. So we'll have to consider the options carefully.
Kalle just had a few good days. So we have time to think about the next step. Maybe, maybe it won't be nessessary after all...

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