We received results of Schuyler's ambulatory EEG tonight while we were driving to dinner. It's funny, but after everything we'd been through, all the anxiety and glue-headedness, I'd almost forgotten that we were waiting for a call back.
As I expected, the news was complicated. It's probably only in the movies that doctors deliver the "everything's okay!" or the "everyone's dooooomed!" speeches. Shades of grey, as I wrote before. But I think we're going to put this in the Good News column.
First and foremost, as in her initial EEG, Schuyler didn't have any seizures during the weekend of her ambulatory EEG, either. If she's having any at all, they are clearly infrequent enough not to pose a problem at this point. Her brain waves during her waking hours were pretty normal, in fact, which makes me think, with cautious optimism, that she's not having any absence seizures at all.
The grey shades come at night. When Schuyler sleeps, the left side of her brain experiences abnormal, unexplainable episodes that aren't seizures but are nevertheless troubling. They don't happen constantly and don't represent a consistent state of being, but they're there, and not random incidents but regularly occurring events. They only come when she sleeps, and they occur mostly on the left side.
Are they precursors to something more sinister down the road? Seizures yet to come? The vanguard of an alien invasion, foretold in Schuyler's strange Martian jabbering? Is this a harmless oddity of Schuyler's funky, broken brain or a Very Bad Thing? Is this a new phenomenon, or has it been there all along, just one more signature of Schuyler's monster? No one knows.
Anyway, there it is. No absence seizures, which is good, but some weird scary boo sleepytime thing that could be nothing at all or the beginning of seizures, stigmata and possibly the Apocalypse. I do believe we're going to celebrate the absence of monster who isn't here just yet, even if its plane has just been delayed, and not worry about the other thing for the time being.
In six months, we'll go through this all over again. Perhaps by then, Schuyler will have forgotten about the glue in her hair. That's not what the smart money says, though.
I just finished your book. I feel like I could have wrote most of it. My little prince is named Robby. He was supposed to be the Y2K baby, but came on 12-26-99. His diagnosis is Verbal Apraxia of Speech. I am going to have him checked for BPP. He has been getting regular headaches so we have an MRI coming up. Your book made me cry. I know too well how you feel dealing with the monster. Thank you for writing the book. You put into words what I wish I could have said. Someday, I want Robby to read the book and hope he understands the love his dad and I feel for him.
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Glad to hear of this, and maybe in six months, someone who's read your post will have put into motion some kind of new adhesive for those damn leads.
ReplyDeleteI'm glad for the good news, the grey news is well - greyish but I'm glad it isn't a clear horrible black and white.
ReplyDeleteHope you find lots of very happy and bright colours this year including that all important pink!
Sounds like some good news! You're going to have to find a bigger bribe in 6 months, maybe a puppy?
ReplyDeleteGrey news beats black news, for sure. It isn't quite as good as white news, but what can you do? Monsters like to lurk in the greyness of shadow.
ReplyDeleteIn 6 months, I'd say you need a decent bribe. ;)
I am glad to hear the good news!
ReplyDeleteNo seizures - that's great, great news.
ReplyDeleteI know we are all being serious and I'm seriously happy that she's not having seizures. But could she be replaying her special version of King Kong at night? I'm just saying. Who would have thought Schuyler would dream like everyone else anyway? But seriously now, glad no black news.
ReplyDeleteRob, so glad to hear your good news. Hopefully the results in 6 months will be even better!
ReplyDeleteCheering for the lack of seizures. Definitely understand about the grey, though. We've got the same thing going on here. Still no idea what it is but it hasn't seemed to have any effect taht anyone can tell.
ReplyDeleteActually, did anyone go through the full tracing to see if those anomalies might, as Linda Ball suggested, correspond roughly to the REM stages of Schuyler's sleep? Just a thought...
Thank G-d about the seizures.
ReplyDeleteMy son has abnormal "stuff" on his EEGs as well.
I am so glad that there are no seizures for your daughter. The grey areas do indeed suck. We just our test results back from Daniel's EEG. Unfortunate for us, his infantile spasms are back and its back to fighting the ugly monster that you also know well. Good Luck with all you guys are doing.
ReplyDeleteI'm happy for you and your grey news!
ReplyDeleteLike everyone else, I am extremely glad to hear that there are no black & white answers. Grey is better, sometimes. Maybe she's adapted some new (better?!) ways of using her brain while she sleeps and it's all part of 'normal' for her. It could be something as common (though bothersome) as migraines. I actually get a lot of migraines that don't have the headache associated, which can cause some of the symptoms that you've described. Instead of the crushing headache, you get spacey or tired or forgetful, etc. for a period of time. They're not harmful, per se, because they're not seizures and there are medications that can help (if it's bad enough to warrant it, they're usually specialized anti-convulsants. But usually it doesn't need any special treatment.). Not that I would wish migraines on anyone (I get the skull-cracking kind too), but it's just another one of those things that the amazing brain is capable of... and who knows what kinds of amazing tricks her creative mind will come up with? :)
ReplyDeleteI am dancing in my seat at the news of no seizures. Celebrate that, rejoice in it, and trust that so far, these "grey" evening episodes aren't negatively affecting Schuyler...
ReplyDeleteWhat on earth are you going to bribe her with to convince her to sit still while they goop up her hair again?!
Six months to google - alternative to hair glue for EEG.
ReplyDeleteI wish you luck. Grey is not really a bad color.
Celebrate the positive and take it one day at a time. No seizure activity is fabulous and definatly worth a celebration.
ReplyDeleteAs for 6 months from now, call around to pediatric hospitals until you find one that has the gel remover pads. They work great and didn't break out my son's scalp. They used it also for removing the adhesive strips on his body as well and it didn't hurt him.
To Kim T : my son is getting ready to undergo an evaluation for Verbal Apraxia. He was diagnosed with migraines around 16 months old. His MRI was normal. No EEG done. Here's to great results for your little one's upcoming MRI.
Interesting that someone mentioned migraines. I asked my mom exactly what all my childhood EEGs were for, and she said the doctors thought my glassy-eyed, red-faced, spacey moments were actually migraines, which supposedly aren't painful as a child. She thinks they were full of it, though. I guess the EEGs didn't show anything conclusive for me either.
ReplyDeleteHi Rob! I just wanted to let you know that the latest issue of Scientific American has an article about how the folds in the brain are formed and what impact that may have on the functioning of the brain. It's not too hard of a read for a layperson, although I wouldn't go so far as to say it's easy. But I thought it might be worth the effort because it has some interesting info that might relate to Schuyler.
ReplyDeleteWow, great news for you all...so happy for you!! As Ive found over the years, EEG's are open to interpretation, 3 different drs will give you 3 different opinions..but seizures not happening during the day is definately a YIPPEE! Did they suggest a sleep study to monitor her REM sleep? psst...Sephora gift cards are a great bribe for the girly girls here....
ReplyDeleteI read your book and just wanted to stop by and say it is fantastic. I enjoy your blog of course as well, learned about it from the book. I'm glad that these results were predominately good. Sending love to your family!
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