Update about Inara


Met with the epileptologist.

It turns out my daughter is having little seizures again — mostly just partial complex (staring spells), and uncontrolled fits of giggling. The giggle fits are adorable, but the epileptologist notes that what’s actually happening there is a rare kind of seizure. Inara will burst into hysterical giggles for a minute, then suck in a deep breath and become aware of her surroundings again. The good news is that her current seizure activity is relatively non-dangerous, compared to everything she has endured in the past (the grand mal, the tonic clonic seizures, etc.). Sometime soon, she is going to have another EMU with wires attached to her head for a few days to monitor. The other good news is that having witnessed both types of seizure activity during the appointment, the epileptologist has a theory about what rare genetic disorder Inara has. She is adding a specific genetic test in addition to her whole exome testing to check for it. If the epileptologist’s guess is correct, then the disorder is one that (a) improves with time and (b) is due to a random genetic mutation and is not a hereditary condition. That means that if Jessica and I have a third child some day, nor when our daughters have children, the condition will not be passed on. (This also probably explains why the condition is so rare and proving so difficult to identify and diagnose.) We will see if the epileptologist’s guess is right.

So there has been a lot of news to take in. It is alarming that we are seeing seizure activity again, but there is more good news on the table than bad, for now.

Now it is time to wait, and wait, and wait for genetic test results.

Which means it is time to go write.

Stant Litore

You can read more of Inara’s story here.

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