Big Update about Inara!

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Inara_purple
Inara: “Silly grownups. I got this.”

I just got this news from Jessica my wife, who just finished a consult with Inara’s epileptologist (who has really earned our trust).

We have confirmed that Inara is NOT having gelastic seizures, and probably hasn’t had seizures since the bad days in early 2013. Her activity LOOKS like gelastic seizures, but it isn’t.

We were worried because Inara has seemingly random fits of uncontrolled giggling where her whole body collapses and spasms with her giggles (this happens several times a day), and then she blacks out. The epileptologist says she’s not seizing, she is just truly having honest giggles, but that in her delayed development, her laughter consumes her entire body, she loses all control of her body when she laughs, and the blacking out is actually from exhaustion.

Just as an elderly person might lose control of their bladder while laughing hard, Inara loses control of everything.

Inara also has a very low exhaustion threshold compared with you and me – it’s why she can’t eat normally yet: she hasn’t been able to develop the necessary muscle tone for her jaws and after trying to eat for a bit, she’s literally too exhausted to continue or to do anything else. (Inara receives 85% of her nutrition through a G tube.)

So apparently, when something strikes Inara as funny, her laughter consumes her and burns what energy she has and then she either blacks out or just slumps and lies listless for a while until her body recovers. We thought we were looking at post-ictal exhaustion. But no, she just literally laughs herself into exhaustion.

Inara is partially blind; the doctor thinks sometimes she might see a shadow from the corner of her eye or a funny blurry shape and that sets her off. “She’ll find something hilarious that you can’t see in an empty room, and she knows it is the funniest thing in the universe.”

I apparently have a very happy daughter. As we’ve confirmed that we’re not looking at seizure activity, the doctor has okayed dialing Inara’s dosage back a bit and continuing to watch her. But she and her team have consensus that Inara is no longer having seizures.

I am vastly relieved. And, once I can start breathing again, I’ll probably also be very amused that Inara finds things in life so hilarious that sometimes she faints from the sheer humor of it…

I’m so used to hitting the high-adrenaline, get-ready-to-fight button whenever something happens with Inara that can’t be explained and that looks dangerous … but now it looks like my wife and I can actually breathe for a while.

So thankful and relieved and exhausted and happy, maybe *I* might pass out. Thank you all for being here and for supporting me and my family.

It is now very possible that Inara is “out of the woods.”

Stant Litore

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