Wednesday, March 30, 2005

Lennox-Gastaut Syndrome

Just got home from Alice's neurology appointment. It seems that her EEG from last week showed no improvement whatsoever from the completely non-medicated EEG. They're going to pull out the "big guns" now and try her on another medication that has a chance of helping.

The problem is that they now suspect she has what's called "Lennox-Gastaut", which is one of the severest forms of epilepsy that a child can have. It doesn't look too great, to be honest. It's an intractable form, meaning that no medication seems to give any improvement in seizure control, and it can grow progressively worse over time. One web site said that up to 10% of LG kids don't live past eleven.

Alice is 9.

Hopefully this new med will achieve some happy results; it's not likely that she will ever be seizure-free, but we're hoping we can at least lessen the frequency and severity of them.

In the meantime, we pray and we wait. This new med is pretty hefty and requires a very slow introductory period. It will be eight weeks before her dosage will enough to even tell if it's having an effect.

She's such a sweet little kid, and so incredibly patient and accepting of all her issues. I'm quite sure I wouldn't be as pleasant.

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