We've been dealing with the issue of Schuyler having focus problems in school ever since the semester began. It's been something we've seen at home as well, where she will phase out and simply not seem to hear us when we say her name. It can be annoying, like the "selective hearing" that most little kids seem to get at some point in their lives, but after a few rocky weeks in school, she figured out her rhythm and started to perform. Her last grade report was all A's. The focus issues continued to come up, but they didn't seem to be seriously affecting her class work, so they became B-List worries.
It wasn't until one of her teachers actually described her moments of scattered focus that something became clear, something that should have been clear from the start, but wasn't. After Julie and I compared notes all day and after going back and doing more reading, and especially after seeing video that it never occurred to me would be available online, we saw it. We're beginning the process of confirming this medically, but today, we think we saw it.
Julie and I now believe that for at least the past six months, Schuyler has probably been experiencing absence seizures.
I'm trying not to beat myself up about this too much. Absence seizures are subtle, after all, and they manifest themselves in different ways, depending on the person. They are also particularly hard to detect in non-verbal subjects, for whom a sudden lapse in conversation is obviously not much of a tell. Watch this video, of a little girl having absence seizures. This video is significant because her absence seizures are almost identical to what we see in Schuyler's little zone-out episodes, particularly in the tiny little movements of her jaw:
As you watch it, ask yourself if you would even notice anything wrong if you didn't know what you were looking for. Absence seizures can be hard to catch even with a healthy, jabbering little kid.
And yet, we should have known better. Ninety percent of polymicrogyria patients develop seizures, most of them between the ages of six and ten. Schuyler turns nine in a few weeks. It's been comforting to think that she was beating the odds again, and it made for a swell line in the speeches I've been giving, but the reality of Schuyler's situation was always there, right in front of our faces. Julie has been preparing emotionally for this day, and so her feelings on the matter are somewhat subdued. Mine you can probably guess.
I suppose that for all my talk, I'd allowed myself to get a little complacent, and a little too hopeful. There's nothing wrong with hope, except when it gets in the way of facing the monster and outsmarting it. Hope can be a positive or a negative force depending on what you do with it, really. Hoping that Schuyler will one day speak is a good thing, for example, even if it's only a remote possibility. But what if that hope led us to put all our efforts into getting her to talk, instead of teaching her sign language and giving her the Big Box of Words? It's the same with the seizures, I suppose, except of course that until the day comes that she has one, there's really nothing to do but be vigilant and prepared to spring into action.
Now that the day may be at hand, the next step is to get Schuyler to a neurologist or an epilepsy specialist and find out if she's actually having them. If she is, then we play it by ear. Seizure meds present complications for PMG patients that can make them an unattractive choice for non-debilitating cases. We'd monitor her seizures, explore whatever medical options were deemed appropriate, and continue to do what we're doing now. We'd work to incorporate her monster into her life, as normal a life as we can give her.
The monster already has a place at the table. That doesn't change. It still doesn't get to eat the fucking table.
While most people with PMG progress from absence seizures to more serious and sometimes life-threatening forms, it is entirely possible that Schuyler could develop something called absence epilepsy, in which her seizures never progress beyond what she may be experiencing now. Even if she develops more serious seizures, the fact that they've developed this slowly and incrementally might mean they won't be life-threatening or an excessive obstacle in her life. She might not be able to get a driver's license, and a career as a fighter pilot might be unrealistic. I suspect she'd be able to live with that.
This has been our fear all along. For five years, the specter of seizures has haunted us. And while this might sound bogus to non-parents, those of you with kids will know exactly what I mean when I say that Julie and I have come to trust our instincts with Schuyler's condition and what it means for her, and we trust it completely. When Yale diagnosed her with PDD-NOS, an autism spectrum disorder, it was our instinctual knowledge of Schuyler and our intuition that told us it was wrong. When we were fighting for her Big Box of Words, we knew on a gut level that she would excel on a speech device.
I've learned to listen to my heart where Schuyler is concerned, and while we won't stop until we have a doctor's evidence, my heart is telling me to get ready. My heart tells me a storm is coming.
In the epilogue of Schuyler's Monster, I address the possibility that Schuyler could one day develop seizures.
The future for Schuyler is uncertain. Our most dreaded fear, the seizures that statistically seem almost certain to come, have yet to manifest. It hangs over us like the sword of Damocles, but sometimes I forget that those head storms might be waiting to ambush her at all. Then I remember and the fear settles back in. That black lump reappears in my chest when I imagine her having grand mal seizures. When I can step away from my fear, however, I also know that even if they do come, she’ll endure and adapt and keep going, powered by an unstoppable will that she possesses and I do not.
If that day is here, it remains true that Schuyler is ready in ways that I'm not, and never will be. But when I lose my way, as I often do, it's still Schuyler who helps me find me way. She's shown me how to do this all along, and I suspect that's not going to change.
As much as I'd like to make it mine, it's still her monster, after all. And she's got its number.
50 comments:
Oh Rob, My thoughts are with all of you. I wish I knew what to say. Schuyler is very lucky though in a way that lots of kids aren't, she has two very involved and loving parents. Who will fight to get her the best treatment possible.
Rob, as I have said before your blog and book have much a huge impact on me as a teacher.
I am sad to hear of this possibility for Schuyler but have no doubt that you and Julie, and Schuyler will overcome this hurdle too.
I'm so sorry you think you're seeing seizures. My daughter has epilepsy due a brain malformation and there is nothing worse than living under the threat of seizures, especially when you fear they may progress into something worse. I really really hope that won't be the case and that she'll be able to find a medication or combination of them that will help without any pesky side effects.
I had so hoped she and you and Julie would avoid this part of things.
As much as I want to say, "it will be fine," I know what you mean about sensing trouble ahead. I've had a little dark Eeyore cloud over my head concerning Mas for a couple of months now...sometimes, you just KNOW. That's all there is to it. I hope, for all of you, that it's nothing, but I wouldn't ignore that feeling you have. Damn PMG. Grrr.
We're living with the same loaded gun, just waiting for it to go off. I'm sorry. And I hope that this time, your instincts are wrong.
I know what you mean about trying to find a balance between hyper-vigilance and complacency. This is a battle I fight with myself (and with my husband) often.
Take lots of deep breaths.
I'm so sorry to hear that. I, too, want to say reassuring things like "I'm sure it'll all be fine" but I recognize that there's a real risk it won't be :(
But you know, don't beat yourself up too much about not recognizing this sooner. She almost made it out of the "developing seizures" range, and the seizures she's having aren't obvious, right? Catching it after six months isn't that slow at all, and now you're working on it.
And Schuyler, quite aside from her own inner resources, has the two of you. It's clear that you're the... well, I can't think of a nifty metaphor, but you're the foundation for her inner resources to have developed at all.
Thinking of the three of you Rob. Though I know that's little comfort.
Fuck you, monster.
I can understand some of that apprehension and dread you must be feeling. My son had a severe traumatic brain injury at age 2, but, unlike most people with TBI, he had never had seizures, and as he got older, I thought he had at least dodged THAT bullet. But, then, 22 years after the injury, he had two grand mal seizures. It was a bitter pill to swallow.
I guess all we can do along the way is hope for the best, but prepare for the worst...and keep on living!
Thinking of you, Julie, and Schuyler. I'm not sure what else to say ...
Rob, my son had these this summer. He would either stare off or his eyes would go up and there was the movements with the lips or jaw.
We took him off of YOGURT and they stopped. He was eating too much casein.
Also, the amino acid taurine prevents them. It is inexpensive.
I, too, had to get people to see what I was seeing.
Don't beat up on yourself. Us parents have been beaten enough. These are S U B T L E!
Wow, that would be so hard to catch. I wouldn't have noticed it in that little girl unless I was looking. My thoughts are with you, Schuyler and Julie.
My 3-year-old has absence seizures, which are now mostly controlled by medication.
I only knew to look for them because she had already been diagnosed with epilepsy--and I knew to look for anything weird.
Her absence seizures were so subtle that no one else had ever noticed them--not even her very loving and attentive dad!
I was watching her like a hawk, and noticed that she would flutter her eyelids several times a day and looked dazed for about half a second.
So, I called the neurologist, we scheduled another EEG, and yep, they were absence seizures. Suck! Our neuro commended me for noticing. Guess I get a gold star--but what I really want is the whole effing disease to go away.
Anyway, your book was incredible. I hope you come to Indiana some time for a book signing or something.
Oh I'm so, so, sorry.
Your blog and your book have touched me enormously and had such an effect on me and my relationship with my son.
Keep us posted.
Petit mal seizures were my first thought in your first paragraph. My mother had both those and a few grand mals sprinkled in during her childhood. Absolutely get her to a specialist. I hear they have wonderful advances in medications since my mother was a wee one.
Oh, Robert. I'm so sorry about all of this. I am the mother of a child with a seizure disorder and know all too well...well, everything that you speak of. I know, too, that we're mostly afraid of what we don't know and right now you don't know. If I knew fourteen years ago, that I'd be here with my daughter, in this place, I joke that I would have killed myself. But the weird thing is that we have come here and have a good life. It makes me realize that "the sword of Damocles" might fall but we will live through that and things will be all right. I hope for the best for you, your wife and your beautiful daughter.
Even knowing to look for the seizures in that video, it took several of them for me to be sure I was seeing one. And, even then, they were still pretty hard to see, or to process as a seizure instead of wandering attention. I agree with the previous poster that said six months ain't bad for catching on to something so subtle.
I know you guys and Schuyler will deal with whatever the monster throws at you. At the same time I'm hoping that seizures don't enter your lives any more than they have already (if they have). I imagine that just waiting to find out is unpleasant enough. I'm sorry you're having to look through this door.
Like the rest, I can only offer sympathy. Are you having conversations with Schuyler about these, or waiting till you know more? Does she notice when she has them?
Oh, my. Absolutely, no guilt for the "missing it" part because really, it doesn't help. What matters now is that you go forward, with the information you have.
And you've said it: Schuyler will show you the way.
xo
I'm so sorry that the monster seems to be morphing before your eyes.
Our 13 year old daughter has epilepsy, which began in a dramatic way with tonic/clonic (grand mal) seizures at the age of 8.
No illness, no injury, no mal-formations, no warning.
My heart goes out to you, but I know that as hard and scary as this development is, you will all face it together, and Schuyler will continue to surprise and impress you on a daily basis.
I'll be following your blog, and cheering from the sidelines with every success she has.
Trust your instincts, always. Prepare for it, but don't let the fear prevent living for the moment or from doing something that needs doing. Instincts are there to jolt us into action, fear can hold us back from it. I know this is all very Zen to say, but seriously, what else can you do? There is no choice but for any of us than to take one day, one hurdle, one demon at a time.
Above all, trust Schuyler. No doctor, not one, knows her body better than she. When they don't listen, you and Julie have proven that you do and fought for her. If she communicates that something doesn't feel or work right, follow that lead.
I'm sorry that her demon has to be such a bloody bastard. Take care.
I'm not really sure how I found you... through blog hopping, but I don't remember where I just came from. Anyway, I'm so glad I did! I love your site, your insight, your perspective, your daughter....
My daughter has a severe seizure disorder and will have seizures and many other anomolies for the rest of her life. She is only 18-months-old, so I often wonder what the future holds for her. I appreciate hearing stories of other parents, just because it gives me strength somehow. Thank you for sharing!
Much love to you and your daughter!
We have dealt with seizures for years with Becca. I too knew what I saw was just not right.
But ONE TIME I was wrong in thinking there was a shunt problem when it was in fact just another seizure type causing headaches. So once in a blue moon, we can be wrong about these things.
I hope you are wrong in this case. For all of your sakes.
If you are not and they are seizures, grab another sword and go in swinging with two in hands. It's a hard fight.
Most important is to find the RIGHT PEDIATRIC NEUROLOGIST to add to that team you have on the field with you. Get many opinions even if the first one makes complete sense. Then do it again later if things change even if you are in love with her neuro at the time.
I believe we would still be playing the med game if we were still living in NC. We came to DC and went to all the best ones around. As a result, we have enjoyed 2008 seizure-free since surgery. Even though surgery is not likely an option for you, you still want the best doc for your team.
Educate yourself. Know what to ask. Record everything now because there may be things that cause them to happen more often to figure out. These silent ones may not be deadly, but can still rob precious learning/life moments.
-Kathleen Riley
Carepage Becca2001
I'm so sorry. But we all know that Schuyler will knock this one down, too, just like everything else.
Thoughts & prayers & good vibes.
Ugh. This... well, it just plain sucks. I think many, if not all, of us who follow Schuyler's story have believed (hoped?) that with her anything is possible, and that she would beat the odds on this front too. You guys went into battle to find the best solutions for everything she has faced before and succeeded tremendously. Dust off those rubber swords, and keep us posted.
You're all in my thoughts. (I really wish there was something I could say that would do any good at all. There's not. So.)
I'm so sorry. Knowing it may happen someday doesn't make it any easier when it does happen.
At least you noticed. When my hearing impaired son would have petit mal seizures, we just thought he was 'daydreaming'. This had been going on as long as we could remember. It was his kindergarten teacher who asked me if he had ever been tested for seizures. Once she pointed out what she was seeing, then I could see it too. So kudos to you for being able to see it as a possibility. At least if that's what is happening you can learn what is best for her, and she doesn't get accused of not paying attention or being lazy, etc. She is so lucky to have her parents.
I wasn't able to watch the video earlier, but I just watched it. They are so subtle. If you hadn't pointed it out I would never have even guessed anything at all, just slight pauses. My uncle has epilepsy and has seizures all the time, I know some of which are absence seizures, and his are quite noticeable. I knew they could be very subtle, but it's amazing how slight they are in this video.
You'll know what to do, just as you know what is in front of you. Sending many thoughts of healing and love to you and yours.
The video of that little girl was so subtle. I kept wondering when something was going to happen, and then I realized why hardly anyone would see what was happening.
Don't beat yourself up. Just keep being your big hearted self.
Melody Platz
Rob. . .
So many thoughts run through my head as I read your post. From the bottom of my heart I can relate to what you & Julie are going through. . .can remember all of the thoughts and feelings and fears. Hannah's started small as well, at 8 years old. . .mostly facial muscles involved. . .a combination of absence and complex partial. Our pediatric neurologist told us that probably around puberty she would either outgrow them or they would get worse. At 14, they got worse, much worse. The good news, with the right meds, she, at 19, has been seizure-free for almost 2 years! But it's a reality that we all always live with. . .at any time, any place.
Here's the thing though. . .there is no pat formula, no one can say it will be like this or that. Every kid truly is different and your journey to find the answers and or meds will be unique. Even meds affect kids differently.
But first and foremost, find a pediatric neurologist and get the MRI and EEG. One place to consider if you don't already have a pediatric neurologist lined up is Texas Child Neurology. It is on Coit between Park and 15th. We've been with them for the three years that we've been in Texas.
Anti-seizure meds are very potent and each have a list of potential side effects as long your arm. We've had one that mentally slowed her down, one that started to send her into a depression and the latest one. . .the one that's controlling her seizures. . .has caused her to gain weight. The side effects have been as challenging to deal with as the seizures.
The thing about the absence seizures is that it is like static on a radio. When they zone out, however briefly, they are missing little snippets of whatever is going on. . .and have to re-engage. ..refocus.
Like I said, so many thoughts running through my brain. . .just know that you, Julie and Schuyler are in my thoughts and prayers. I hope one day soon here in Plano our paths will cross.
Annie B.
I am sorry that there is the possibility that Schuyler is having seizures. I am sure she will fight with all her being against her monster. My son and Schuyler share the same diagnosis. I can tell you that it may seem frightening, but you will learn to incorporate this part into your lives too. It takes some getting use to, no doubt about it. Daniel's seizures started at 4 months old, but he has been seizure free for the past year. Research your medication options as some aren't that nice. Daniel has been medication free since September '08 (knock on wood). If you want a wonderful neurologist in Michigan I can recommend one! Schuylers tough...this won't stop her!
Oh, man. I know what you are going through and I really feel for you. I hope it turns out that Schuyler isn't having them but if she is, there is so much good treatment out there I am sure there will be options for her.
Max had seizures at birth. Then we took him off the meds at six months and he ended up having a fever-triggered grand mal when he was a year and a half. The fear and devastation we felt that day were comparable to what we'd felt at the hospital after he was born and we learned that he'd had a stroke. Now he's on Trileptal, which is considered a pretty innocuous med.
I hope you can get to a neurologist soon for answers.
And, yes, as parents we must always trust our gut. We know our kids better than anyone else.
My heart goes out to you guys tonight.
My heart dropped after your first paragraph. I knew you were going to say she'd had a seizure.
But woahhhhly shit, you're not kidding about subtle. I had to watch it twice to see it at all.
I have confidence in Schuyler's monster-butt-kicking abilities. I hope you get some answers soon!
Schuyler, Robert, and Julie,
Your daughter is a survivor, a thriver.Its said that God never closes a door but that he opens a window. Schuyler is blessed that she has a pair of parents who fight fiercely for her. These traits mentioned in you three will be needed during the rounds of tests and neurologists to come. If it is seizures, you all will help her deal with it. You only have to look at your daughter's beautiful face to know that she is going places; that child has a huge spark of life in her that will help her through any challenges. I will keep you all in my prayers,
Barbara
If you hadn't told me what to look for in that video, I never would have guessed anything was wrong.
It says a lot about your vigilance that you managed to notice anything at all. You saw a pattern that probably would have been overlooked by anyone else. I would be hard-pressed to see anything other than an 8-year-old's attention wandering.
Rob, I'm so sorry that the monster is creeping up....I have epilepsy, absence seizures were frequent, but, with medication, they are under control, and the newer generation of meds I'm on have very few side effects (and I am the side effect queen) my thoughts are with you all in this process...
Sending good thoughts your family's way...
Just an anecdote: I have a friend who has absence seizures, and she is overall pretty darn functioning. She holds a good job, has lots of friends and fun, and about the only "daily" thing she can't do is drive a car. So she takes the public transit, gets a ride or taxi. Of course the seizures influence her life. But they don't rule it, which seems similar to Schulyer's monster. I love how you express Schulyer's brokeness...it's there, but you and your family aren't letting it run the show. I know everyone is different, and Schulyer's monster is such a different beast than what most of us know, but I thought I'd weigh in with a hopeful story for you.
{*{*{*{*{*{Rob}*}*}*}*}*}
{*{*{*{*{*{Julie}*}*}*}*}*}
{*{*{*{*{*{Schuyler}*}*}*}*}*}
I know you'll do what you can to keep that monster's teeth out of the table. Don't beat yourself up about not noticing them before, it's an encouraging sign that she seems to be working around them to a fair degree already. Here's hoping they never develop into anything more severe or dangerous.
I have had them too, mostly as a child, though of course not for Schuyler's reason, and they seemed to be more of an annoyance for others than anything, there's nothing really uncomfortable about them except the reaction of people who think you're ignoring them. ;-) And the feeling of just having missed something.
I'd never seen examples of them in others until watching that video, and now I wonder if I still do have them sometimes, because friends will sometimes start looking at me funny and asking "what?" in the middle of a conversation, as if I've just done something weird.
Of course you will remain vigilant for signs of more dangerous activity, but try not to wear yourself out with it, okay?
I read your first paragraph and my stomach fell. I've had enough students with absence seizures to see where you were going. I am so sorry. You guys have such a strong family. The rest of the comments gave good advice. Keep fighting, trust your gut, and stay strong.
Well, that just sucks. I don't even know you guys and I'm just mad and sad all at the same time that this has now come up - so I am not even going to pretend that I know how you and Julie feel. I don't have any words of wisdom for you. I've never dealt with anything like this. But I do pray for you guys. I know that may not be what you want to hear either, but I do. And I am really sorry you are hurting.
Oh...Rob, I'm so sorry to hear this! I hope you're wrong, though your description of Schuyler's inattention does sound similar.
I know this doesn't mean much, as every person is different, but I had epilepsy as a child, with many petit mal seizures and only one grand mal. It didn't affect my childhood at all, although my parents were sure to explain to other adults that they had to keep a closer eye on me in places like the pool than they would for children without epilepsy. I still have no memory of any of the episodes or even of people commenting on my inattention. I was a pretty quiet, daydreamy child anyway, so I guess it just wasn't obvious. Hopefully, Schuyler will be able to live her life to the fullest without much notice of the seizures, especially if you're able to find a medication that works for her.
I was lucky enough to grow out of my epilepsy, although there's always a chance it could come back. I hope your family will continue to do amazing things even with this development.
In the last clip, at 2:07, when the seizure starts the mother quickly looks at the camera. That look breaks my heart.
Rob... I hoped this day would not come.
You mention complications from meds. What would happen if she had seizure meds? Ricky takes them for two complex partial seizures he has had (with inexplicably clear EEGs and MRIs) and they work well. I wish this were an option for Schuyler.
Ricky, I think, has absence episodes too. Now that I have watched that video, I recognized something. So thank you for showing us that. :/
That video is chilling precisely because, as you pointed out, I would have had no idea that that child was having seizures. I'm sorry to hear that you think Schuyler's having them and hope that this is as bad as they get.
In the last clip, at 2:07, when the seizure starts the mother quickly looks at the camera. That look breaks my heart.
I recognize that look, too. Julie and I have been giving it to each other every so often this week.
Rob, I am sorry that you guys are dealing with this. My daughter has Rett Syndrome. Her seizures started the same way nearly 2 1/2 yrs ago. They were simple-partial seizures. Today they are generalized, and a bit more obvious. But, she has been on Zonegran for since the first seizure and has no side effects! Today she has about one break through a week. I know not all kids are the same, but just wanted to share our story and say we are thinking about you.
Shit, shit, shit. I'm so sorry. I know that she's still DAMNED lucky to have you and Julie as her parents and she will learn how to adapt if these are seizures. My thoughts are with you, Julie and Schuyler.
Love and courage to you all.
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