May 12, 2011

Same as it ever was

Originally uploaded by Citizen Rob
So the results of Schuyler's EEG are in, and they are... exactly what I thought they might be. She had no seizures during the 72-hour EEG, as we suspected. The choking incident wasn't triggered by anything neurological, and no seizures were recorded during waking hours. We haven't observed anything suspicious since probably a week before the EEG, so we weren't surprised. It's not the neurologist's fault. Schuyler's monster is apparently on Spring Break.

Well, that's not entirely true. Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.

Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.

That's a lot of marimbas, friends.


Elizabeth said...

I am relieved that her EEG looks all right -- at least during the day. I'd go drugless for as long as you can -- and take a look at the book "Epilepsy: A New Approach" by Adrienne Richard -- it's a great complement to traditional methods of dealing with seizures.

I'm thinking about you three, hoping that more monsters will be kept at bay.

Amanda Jaksha said...

My daughter has 'night pops' as you call them ;) REM sleep and language have a very close relationship. Have you tried melatonin? It helps Ava get healthier sleep unlike the effects it had (none) when she was an infant. Best of luck!

C said...

Hi Rob,
We met at the Apraxia of Speech walk-a-thon in Texas 2 years ago. Ava and Schuyler played all afternoon together and we parents got to talk. I am sorry for not keeping in touch-it's been a rough couple of years with Ava. Even though I haven't made contact, I have followed your blog since then. Schuyler is a household name since Ava seems to follow in her footsteps. I wonder if I follow in yours. The emotions I go through seems to be unrecognized by many friends and family, but you seem to express what I am feeling quite perfectly. So thank you. Ava is about to turn 5 now. Since the time we met, we have moved from Florida to Minneapolis, Minnesota for better medical care for Ava. Dr. Dobyns recommended a good neuro in the Twin Cities that he works well with. I just wanted to say that I am sorry you are all going through this- the complex partial seizures Ava was diagnosed with at 2 never seems to be caught on EEG's as well and it is quite maddening (even though some think that should be good news...) Thank you for your writing. Since finding your book in 2009, You are the reason we have an answer to our own daughter. Please say hi to Schuyler and send her our love.
Christy Collins

Nechama said...

i just love schuyler :)