March 4, 2011

Polly


Flygirl
Originally uploaded by Citizen Rob
You watch for the big monsters. You brace for them, wait for them to come so you can wrestle with them, your feet firmly in place, set for the match. But the thing is, when they arrive, they never feel like big monsters. They don't even reveal themselves all at once. They quietly walk into the room, never in the light but rather in the shadows at the edges. It can take a long time to notice that they're even there, and to identify what they are.

Two years ago, we faced the possibility that Schuyler was beginning to have absence seizures. This was tough, but not unexpected; the majority of kids with polymicrogyria, as many as 85-90% of them, develop seizures. Over the next couple of months, we went trough the whole process of EEG evaluation, including a fun test where Schuyler had wires glued to her head for a whole weekend. That test was ultimately inconclusive. It didn't record any outright seizures, but it did show a "significant neurological event" occurring periodically on the left side of her brain while she slept. Her neurologist had no idea what it was, only what it wasn't. No seizures, not yet, but maybe... something.

I hate writing about something that might embarrass Schuyler one day, but it's kind of hard to avoid at this point, so I apologize in advance. A few weeks ago, out of the blue, Schuyler had an accident. She peed her pants. A few days later, it happened again. Both times she said she tried to get to the bathroom in time, but didn't make it. She explained, as best as she could, that it just happened. One minute she didn't have to go, and the next, it was too late.

Last night, at the house of a friend, it happened again, catching her completely by surprise. And then tonight, after we got home from school, one minute she was sitting down with her Happy Meal, and the next, she was running to the bathroom, in vain. Another accident.

On none of these occasions was anyone actively observing her in the exact moment. But we know the warning signs; we've known them for years, always kept them in the back of our minds.

Typical absence seizures are primary generalized seizures characterized by brief staring episodes, lasting two to 15 seconds (generally less than 10 seconds), with impaired consciousness and responsiveness. They begin without warning (no aura) and end suddenly, leaving the person alert and without postictal confusion. Often, the person will resume preattack activities, as if nothing had happened. Simple absence seizures are characterized by staring spells alone. In complex absence seizures, which are more common, staring is accompanied by automatisms, such as eye blinks or lip smacking; they may include mild clonic, atonic, or autonomic components involving the facial muscles. There may also be a slight nod of the head or semi-purposeful movements of the mouth or hands. The automatisms tend to be stereotyped, with the same behaviors occurring during each seizure. Penry et al observed automatisms in 63% of all absence seizures. However, the automatisms are less elaborate than those observed with complex partial seizures. There may also be autonomic manifestations, such as pupil dilation, flushing, tachycardia, piloerection, salivation, or urinary incontinence.

"Absence Seizures and Syndromes: An Overview", from Perspectives in Pediatric Neurology

So again we brace ourselves, not for that often-imagined moment when Schuyler falls to the floor in a grand mal seizure and suddenly It Has Come, but rather for the suspicion, the realization that something may already be happening, that the odds may have caught up with her at last. Last time, we wondered because Schuyler had been spacing out from time to time. This time, the signs are even more compelling. And again, we'll put Schuyler in the hands and the sensors of a neurology team in the hopes that they may have their crown of wires attached to her at an opportune moment so that we can finally know if this is beginning in earnest.

Schuyler is eleven now, and we believe that she's old enough for a little more adult conversation about this. She's known about her condition for a while. A number of people have written to me over the years, afraid that words like "broken" and "monster" were going to scar her somehow, but the fact is that we've had some version of this conversation going with her all along. People afraid of how Schuyler might feel if she read my words one day are missing the point. She's been hearing the words, she's been soaking up the concept. Hiding her reality from her would be wrong, and it would be pointless. She faces the big truths in her own way; she processes them in her own time.

She was feeling humiliated by her accident tonight, as she had the night before, so I sat down with her and explained that these accidents might not be her fault. I told her that the same thing in her brain that makes it hard for her to speak clearly, the thing that causes her to drool sometimes and keeps her from eating some foods, that thing might also be causing her to pee her pants every now and then. I explained how our brains run on electricity (which she thought was pretty cool), and that some brains use too much electricity sometimes, which causes them to overload. Those overloads are called seizures, I told her. Some of them are brief and small, so small that the person doesn't know that they had them, while others are bigger.

I told her that we will have to see a doctor again to be sure, but that she might be having those little seizures, and if she is, that might be causing her to pee her pants. I told her that these seizures were cause by the thing in her brain that made her different.

"What's it called?" she asked.

"What's what called?"

She pointed to her head. "The little monster in my brain."

It occurred to me that I might not have ever actually told her this part. "It's got a long name, it's called polymicrogyria."

She thought about that for a moment, and then laughed. "That's a funny name," she said.

"Do you want to call it something else?" I asked.

"What's it called?" she asked.

"Polymicrogyria."

She laughed. "I know, I know!" (She says "I know, I know!" a lot when she gets excited.) "It's Polly the Monster!"

I see a monster that may finally be giving my little girl seizures, might be delivering on the ugly promise we'd been made when Schuyler was diagnosed almost eight years ago, and I feel my heart drop again.

Schuyler sees that monster, and she nicknames it Polly.

As we drove to pick up Julie at work, Schuyler sat quietly in the passenger seat, processing. Finally she turned to me.

"Daddy? I don't want a little monster in my brain."

She said it seriously but not somberly, sad but not crushed. I told her that I didn't want her to have it, either, but there was nothing we could do but make the very best of it, the same as we always had.

She shrugged a little and said, "I know."

Later, she asked Julie if she was sad. She said it with concern for her mother, but I didn't get the sense that she was terribly sad herself. I mean, she wasn't thrilled by this new situation, but she was processing it already, moving faster than we were, perhaps sensing that some very hard stuff may be waiting in the near future but already impatient with the sad.

"I know." She knows.

43 comments:

Melissa Luxmoore said...

Oh Fuck

Sisi said...

You might also want to have her checked for a urinary track infection, since they often cause sudden urges and bladder accidents.

erika said...

You are right, monsters sneak up on us insidiously. But Schuyler, Schuyler is truly amazing with her sweet indomitable spirit. And you are too. You guys can deal with this new effin' monster too.

Suzanne said...

This post made me cry, but it was terrific how you handled your talk with her. There's no real way to go but honesty.

Anonymous said...

Left side neurological activity, huh....

Yeah, that was enough for me to justify meds (for myself) to make the episodes go away.

Best of luck to you and Schulyer in your continued travels and battles with Polly the Monster.

I know.

fossette said...

Rob, I've been reading you since long before Schuyler was even a twinkle in your eye. I've seen commenters pick fights and complain on many different topics. I've seen you sometimes respond in a way that didn't seem to suit who you are.

But when it comes to schuyler and. Her monster..fuck them all. You and julie are doing an absolutely amazing job and to hell with anyone who isn't walking in your shoes yet feels they have the right to question your methods.

Schuyler will come through this as strong as ever, because she has the two of you beside her.

Candace said...

Very touching, Rob. I really loved this post. I know it is so hard but the way you guys handled it is remarkable. Giving my pause for thought, today, for how to handle Faith as she grows.

M.A. said...

I'd like to clone you and put you inside the heads of all of us who work with kids and monsters. Your writing, your thoughtfulness and Schuyler's spirit are--well, there are no words. You make me cry and you make my heart warm, all at the same time. Thank you.

Domestic Goddess said...

So sweet, that girl.

We have two boys with similar seizures. They were 3 and 5 when diagnosed, 8 and 10 now. We got them under control, thankfully. And now they sleep. They never slept before. But for a while, it was UGLY for my younger son. Couldn't get them under control, lost what little speech he had and it has taken us five year to claw our way back. But we're doing it. And our kids? They've known all along, we've told them through the past few years about the challenges they face. And they are okay with it.

Sometimes kids are so much wiser than parents.

Julia O'C said...

I'm really sorry. I don't know what else to say. I'm just sorry.

Niksmom said...

Damn, I was really hoping this was goig to be a post about Schuyler's newfound love for all things Polly Pockets. *sigh*

I am sorry that Polly seems to be settling in and bringing more of her stuff to your house. I love how you handle those conversations with Schuyler. People can say WTF they want about stuff, but the relationship you have with your daughter is inspiring and beautiful.

I have been down a similar road with my son, Nik, in the past. I'm sorry this is becoming a part of your lives. Wishing you (all of you) simple answers and easily treatable stuff.

Missey said...

Dear Rob,
Thank you for sharing. Our 2 year old daughter was diagnosed with polymicrogyria in February 2010. The information you provide is so helpful. Everyday our thoughts are with Schulyer, too. She is our hero.
All the Best

diviner said...

My wife, Carole, has been fighting her own monster for over 40 years now - epilepsy. I know that you know the same thing that I know - you have to acknowledge the monster, talk about it, and be there to support Schuyler when it causes embarrassing problems, and above all, reassure Schuyler that it isn't her fault.

I'm still giving Carole this same reassurance after more than twenty-five years. In some ways her condition is better than it was, but it's been a trade-off - she doesn't get anything like the number of full-blown tonic-clonic seizures that she used to get, but her memory and emotional fragility is somewhat worse than when we met at University.

We who live with our loved ones' monsters cope. We fight. We don't let the monster get us down. We don't let them get our loved ones down.

Unknown said...

This made me cry.

Rob and Julie, never question the fact that you are clearly amazing parents. Schuyler is remarkable, but she didn't get there on her own.

I'm so glad you're flat-out honest with her. That's the only way to be.

Carol Askew said...

Rob, I'm so sorry you have the seizure worry. Megan's been on seizure meds for 6 years now. I wish that you and Schuyler didn't have to deal with this. It broke my heart reading about her accidents. And her naming of Polly, and not wanting that monster in her brain - aarrgh! So poignant. I will mention that when we started Meg on seizure meds, her developmental rate sped up. She was able to focus better, retain information better. I'm sure it depends on what kind of neurological stuff is going on and if there is anything interfering with learning already. Although it sounds like Schuyler is doing great already with that. Good luck with everything.

jtj said...

This made me tear up. As parents we hate to watch our kids suffer and often wish we could take their place and suffer for them, I'm sure you feel that way right now. I can't imagine what you and your family are going through. I'll keep you in my thoughts. Schuyler is an amazing human being.

Fuck Polly.

Anonymous said...

Schuyler is awesome.

Polly sucks. I hope the diagnostic cycle gives you clearer results this time.

Linda said...

I hope the next time anybody does question the wisdom of making it clear to Schuyler that her monster sucks and is mean and not friendly, you will point out that her knowing that certainly sounds from this story like it helped her be less surprised when she found out it was doing ANOTHER lousy thing to her. I don't know how you'd tell a girl in her position -- who is frustrated and embarrassed -- to think of her situation as just a different country to visit. Your approach wouldn't necessarily be right for everybody or for every kid, but for your kid, putting the map in her hands with the fire swamps marked seems to make her less scared, not more.

Sabrina Steyling said...

I am sorry to hear of this latest development; however, Schuyler is definitely one steadfast and brave kid. I wish you the best as you go forward with Polly (which, by the way, as cute as it is that Schulyer nicknamed the monster as such, makes me grimace).

CarrieT said...

I am so sorry to hear you are dealing with this. :-( My heart is sad for you. But thanks for sharing from your heart. My daughter's level of mental handicap is such that she will probably never be truly aware that she is different. Could be a blessing in disguise in some ways as we won't have to explain it to her. :-( Hugs to your family and sending up a prayer for you all.


Carrie T.

Annie B. said...

Rob. . .your description of complex absence seizures is exactly what Hannah's looked like at first. They were well managed with meds for five years. What changed the whole ballgame was puberty. We had been told early on that when puberty hit, she could either outgrow them or they would get worse. For Hannah, they got worse. Her small absence seizures turned into generalized, scare the heck out of you big ones. After 3 years of various chemistry experiments with different meds, she has now been seizure free for 4 years (on meds).

I mention this only because at age 11, Schuyler is on the threshold. Maybe that has been part of your discussions with the neurologists already. . .but if not, I'm wondering if the initial stirrings of hormones could be contributing to her current developments??

Robert Hudson said...

Annie, that is exactly what we've been concerned about. The chemical and hormonal changes that she is beginning to experience are something we've feared all along, and not because she's turning into a teenager, scary though that probably should be. Her brain chemistry is about to change in a big way, and we were warned from the very beginning that it might very well be the trigger that we've been fearing. At least we're ready for it, I guess.

She has an appointment with her neurologist, but not until April 25th. That feels like along wait to me, but apparently it's nothing compared to what others have experienced.

Emma said...

I am so glad you posted this although it must have been tough. My son is severely sutistic and I have long suspected seizure b/c of some abnormal things I have seen in his sleep ( forget the odd motions I see during the day!). His EEG was abnormal but inconclusive. He also has episodes of bladder accidents that seem to occur in clusters.He is on one type of antiseizure med but I don't think it is doing anything. sigh. best of luck as you investigate

Alexis said...

I'm so sorry that the zeizures have quite possibly come into Schuyler's life. I'm glad that you're being proactive and getting this checked out ASAP. And Polly, what a cute name for the monster.

BigRed said...

I'm so sorry to hear this! Poor Schuyler. My own mother had epilepsy (mainly absence seizures with one or two grand mal sprinkled between) throughout her childhood and adolescence. She "outgrew" them by the time she was 18 or so (although she told me at that time she used to fake them to get out of school!). It is a hard road and it has greatly colored her entire life...however, as a child in the Baltimore Public School District in the 60s, I believe she had far less support than Schuyler has (medical, educational, and emotional). Thinking of you all as always, please keep us updated.

Aimee said...

The comment I've been meaning to leave for months now seems rather inappropriate at this juncture, so I'm going to sit on it for the moment, beam hugs and hope your way, and second Sienna's suggestion to check for a urinary tract infection. As likely as it may be that these accidents are caused by her monster, UTIs are always something you want to rule out. (I used to work in a nursing home, and now work with adults with developmental disabilities; in my years in both settings, I've found UTIs to be surprisingly common in girls and women who have difficulties with fine motor skills/control of their hands.)

JaeJaesMom said...

My little boy also has a monster in his head. Sadly, his birth mother put it there -- left it as her legacy for him to bear for the rest of his life. Fetal Alcohol Syndrome. It is a monster that robs my little one of joy, sleep, peace of mind and body, and the ability to control his body and emotions. At times, I see my REAL son, without the monster, and he is such a wonderful, happy, loving little boy. And then the monster fights back again -- hard. And he gets sick, he stops sleeping, he stops being able to play with his toys and with his friends and cousins because the monster just gets too big. This is one of those times. My heart hurts for him, yet my patience with him often fails. And then I feel awful. It's the monster I should be frustrated with, angry with, yelling at -- not my sweet little boy. Thank you so much for sharing your story so honestly and sincerely. Yes, some may take issue with us as parents calling anything about our children "monsters" -- but they don't see what we see. We see our wonderful children. And then we see the monster that prevents our children from doing the things they want to do and being who they want to be. What else are we to call it? A friend? NEVER!! It is a monster that lives in their heads, making their lives so much more difficult than life should be for any child. We love our kids and we will fight! Not against our children, but against the monsters that plague them. Keep fighting for Schuyler and all the other little ones out there who are fighting monsters of their own.

ANewKindOfPerfect said...

You have clearly done an amazing job of raising Schuyler with the knowledge that her monster is a part of her. That doesn't mean she has to like it anymore than you like it. Polly is a bitch.

I hope that she is not having seizures. I would second the other comments about having her checked for a UTI. That would be an easy test that might alleviate a huge fear.

Miz Kizzle said...

That totally sucks. Peeing one's pants is no fun, especially when one is eleven and trying hard to fit in. None of the cool girls in her class pee themselves; it's just one more way she's different.
If she's not experiencing pain or burning on urination and she has no fever she she probably doesn't have a UTI but they're quite common in kids, especially among devotees of bubble baths. You might want to get her urine checked, just to rule out that possibility.

mooserbeans said...

I am so sorry. When I read about her naming the monster Polly, my heart leapt inside me and I cried. You have such an wonderful kid. You are also a wonderful father. It is so important for any girl to have a caring father to talk to.

Elizabeth said...

I know.

Wonderful post -- that Schuyler is -- well, she's amazing. And you and Julie are such beautiful parents.

Becky Burdine said...

Oh wow. This made me cry too, but I am so proud of Schuyler for looking the monster in the face and naming it Polly. What an amazing individual she is.

So onto Polly, my daughter has absence seizures and there is good and bad here. Good because they aren't likely to be life threatening. Bad because its hard to tell if she is having them! We get EEGs every six months. The onset of puberty can cause seizures, even in kids who don't have an identified neurological issue, so this might be part of it for Schuyler.

So if you do need to start thinking about AEDs, I'm happy to share our experience with those we have trialed to find the ones that work for my daughter.

It may not feel like this to you, but for me, worrying about them is almost worse than actually getting confirmation and then treating them. With the absence ones, I worry about the ones I miss and how much they may be impacting her ability to function. When we have good seizure control, my daughter blossums. When we don't, or when I worry about whether we do, our lives are just stress.

We're here for you and your family Rob. Can I do something to help?

Kathleen said...

That is a long time to wait to see a neurologist, but we have learned that there really is no real hurry. Seeing a neuro sooner will not change the path or timeline.
Now if she were seizing many times per day and you know that you want to start a med now to try and calm things - go see her pediatrician who can simply call the neuro and see what med would be first in line for Skyler. If you have seen the neuro before, he may be willing to prescribe something on the phone.
Seizures suck and the med game sucks almost as much.
My daughter had epilepsy surgery three years ago which took her seizures down from 7-8 per day during bad times to one ever 6 weeks or so. They left, what she refers to as, "the seizure monster's toe" in there. They may have to go back in and get it someday.
My daughter has much the same outlook and attitude regarding her monster and assorted other conditions.
I try to look at it the same way. Because too much life is missed when you waste it worrying about what may or may not come of it all.
There are plenty of disposable underwear options avail. to keep her from getting embarressed. And the hormones. . . they do play a role most definitely.
Do be sure to check for your basic urinary/womanly problems. Would love that diagnosis.

Donna said...

Urinary track infections, and sometimes drinking too much soda can cause the peeinginthepants thing too.

Unknown said...

Rob, I've been reading you longer than you've had Schuyler, as well. And this post made me cry, also. As a mom who follows a lot of what goes on in the autism community (where seizures so often are a reality), there is often a correlation between seizures and menarche in girls. I can't find the specific citation, but the timing is such that you could set a calendar by it in some girls. I hope you don't have to. I pray you don't have to.

Nicole P said...

Ugh. I'm so very sorry, please tell Schuyler so. In the year before diagnosis of my diabetes, I had five or six accidents - one at school, one in the middle of a department store. It was the first of diabetes' humiliations.

I hate that she's going through this. I hate that it may be a sign of worse things to come. :(

And I'm sending her - and you too - my love - from across the miles.

Kathy W. said...

I'm so sorry; she doesn't need this on top of everything else, and it just makes me mad!

Nicole's comment made me wonder--it's a long shot, but in addition to the UTI testing, what about testing her blood glucose?

Robert Hudson said...

Her blood glucose level is within normal range, and she's not showing any symptoms of a UTI, although we're going to get her in to a doctor to make sure.

Kathleen said...

Oh and the neurologist will roll eyes and stop listening to you if you do not show up already tested for UTI and every other yeasty, womanly irritation that may cause incontinence (remember with hormones, there is a lot of changing going on down there).
This is where my hubby prefers to cover his ears and hum a happy song.
I wouldn't be surprised if a bladder and kidney ultrasound is ordered before any seizure meds or further neuro work-ups.
Even with her history, we had to go through a battery of other specialists to ensure that it was indeed the seizure monster back again. Same age range.

krlr said...

I wish I had something more profound to say but, alas, no. I'm so sorry - sorry that there is One More Thing on an already full plate. Sorry at what it might mean for the future. From a third person & relatively new reader, you both appear to be handling it with grace. But that's usually the only option, no? Though wailing & gnashing of the teeth might be more satisfying in the short term. Best of luck to you & your girl.

Erin said...

I was lucky enough to catch an old movie starring Gregory Peck called Gentleman's Agreement this morning. This movie reminded me greatly of Schuyler. For one, Gregory's character in the movie goes by the name Schuyler, spelled that way and everything. Its the first time I've seen it spelled that way since I stumbled upon your precious daughter and your book.

Second, though the movie is about a man, que Gregory Peck, pretending to be Jewish so as to write an article about anit-Semitism. A few lines in the movie stood out as to how I feel about expressing the feelings of having a "broken" child.

"What do I say? Dear Dave, give me the low down on your guts...when you hear about Rankin calling people Kikes? How do you feel when Jewish kids get their teeth kicked out by Jew-haters? Could you write that kind of letter Ma? That's no good, all of it. It wouldn't be any good if I could write it. There's no way to tear open the secret heart of another..."

Thank you for sharing your secret heart about Schuyler. I don't have to tell you what an awesome kid Schuyler is, you know, and I guess my point is that there are a ton of broken kids and their parents out there that know just how awesome she is too. In my secret heart I truly hope everything turns out well for her.

Deirdre said...

Very sorry to hear this. It might be worth looking into research on the modified Atkins diet - can have an amazing impact on seizures (Good for diabetes too). No one seems to know why it works but does for some.
Good luck

Anonymous said...

wow... i really like that she named it polly =)

seizures are really scary... i've never had a seizure (as far as i know) but i know that since i'm autistic i could have them, and my college roommate has them (once in front of me... that was terrifying...)

does it bug you when people joke about seizures? it didn't bug me super much until my roommate had one in front of me and now any time someone jokes about them i want to punch them... or someone i knew who kept telling me that it had had a seizure when it clearly hadn't, and that a tic that it had was a "cold seizure" (i have the same tic and i actually think it may have been copying me... it's just twitching a little randomly, particularly when i'm kind of cold, but it's not shivering)