tag:blogger.com,1999:blog-22878815.post3325765412122618014..comments2008-12-26T01:35:12.098-06:00Rob Rummel-Hudsonhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-22878815.post-85524902360398943552008-12-07T08:53:00.000-06:002008-12-07T08:53:00.000-06:00Love and courage to you all.Lauriehttp://www.blogger.com/profile/04681145748925087647noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-35515021116839421752008-12-06T22:15:00.000-06:002008-12-06T22:15:00.000-06:00Shit, 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.Jenbusterhttp://www.blogger.com/profile/08781248354977057231noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-53717804072470415752008-12-06T20:18:00.000-06:002008-12-06T20:18:00.000-06:00Rob, 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.Caitlynhttp://www.blogger.com/profile/07083975974025991852noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-29085595718637867282008-12-06T19:17:00.000-06:002008-12-06T19:17:00.000-06:00<I>In the last clip, at 2:07, when the seizure starts the mother quickly looks at the camera. That look breaks my heart.</I><BR/><BR/>I recognize that look, too. Julie and I have been giving it to each other every so often this week.Robhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-63026725333792792402008-12-06T19:11:00.000-06:002008-12-06T19:11:00.000-06:00That 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.Shawnahttp://talpidae.diaryland.comnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-52527007194521339912008-12-06T18:36:00.000-06:002008-12-06T18:36:00.000-06:00Rob... I hoped this day would not come.<BR/><BR/>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.<BR/><BR/>Ricky, I think, has absence episodes too. Now that I have watched that video, I recognized something. So thank you for showing us that. :/Rebekahhttp://www.blogger.com/profile/14644220468688690340noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-57411282689083142422008-12-06T17:54:00.000-06:002008-12-06T17:54:00.000-06:00In the last clip, at 2:07, when the seizure starts the mother quickly looks at the camera. That look breaks my heart.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-25873568400319257322008-12-05T23:58:00.000-06:002008-12-05T23:58:00.000-06:00Oh...Rob, I'm so sorry to hear this! I hope you're wrong, though your description of Schuyler's inattention does sound similar. <BR/><BR/>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. <BR/><BR/>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.Quill2006http://www.blogger.com/profile/10097526801571036393noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-60391620494599442732008-12-05T21:57:00.000-06:002008-12-05T21:57:00.000-06:00Well, 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.Michellehttp://www.blogger.com/profile/01926608765557919228noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-54755113887465314682008-12-05T18:12:00.000-06:002008-12-05T18:12:00.000-06:00I 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.mooserbeanshttp://www.blogger.com/profile/13741457687176429345noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-82636275701376108082008-12-05T17:27:00.000-06:002008-12-05T17:27:00.000-06:00{*{*{*{*{*{Rob}*}*}*}*}*}<BR/>{*{*{*{*{*{Julie}*}*}*}*}*}<BR/>{*{*{*{*{*{Schuyler}*}*}*}*}*}<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>Of course you will remain vigilant for signs of more dangerous activity, but try not to wear yourself out with it, okay?Nightfallhttp://www.blogger.com/profile/00711282713939330974noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-47875867275771102622008-12-05T12:59:00.000-06:002008-12-05T12:59:00.000-06:00Sending good thoughts your family's way...<BR/><BR/>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.wenhttp://www.blogger.com/profile/06342067075957452649noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-6601413077133705162008-12-05T10:33:00.000-06:002008-12-05T10:33:00.000-06:00Rob, 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...Mairehttp://www.blogger.com/profile/00018934862739637076noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-7745017302103345352008-12-05T00:30:00.000-06:002008-12-05T00:30:00.000-06:00If you hadn't told me what to look for in that video, I never would have guessed anything was wrong. <BR/><BR/>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.Heather Cnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-48933641291480260592008-12-04T23:46:00.000-06:002008-12-04T23:46:00.000-06:00Schuyler, Robert, and Julie,<BR/> 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,<BR/> BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-74922968747502903082008-12-04T23:23:00.000-06:002008-12-04T23:23:00.000-06:00I have confidence in Schuyler's monster-butt-kicking abilities. I hope you get some answers soon!little.birdyhttp://www.blogger.com/profile/07156310917613899680noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-17113005528265957302008-12-04T22:57:00.000-06:002008-12-04T22:57:00.000-06:00My heart dropped after your first paragraph. I knew you were going to say she'd had a seizure.<BR/><BR/>But woahhhhly shit, you're not kidding about subtle. I had to watch it twice to see it at all.electricboogaloohttp://www.electricboogaloo.net/wordpressnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-6085130559799522102008-12-04T22:54:00.000-06:002008-12-04T22:54:00.000-06:00Oh, 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.<BR/><BR/>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. <BR/><BR/> I hope you can get to a neurologist soon for answers.<BR/><BR/>And, yes, as parents we must always trust our gut. We know our kids better than anyone else.<BR/><BR/>My heart goes out to you guys tonight.Ellenhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-78872267350461776792008-12-04T22:11:00.000-06:002008-12-04T22:11:00.000-06:00I 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!Melaniehttp://www.blogger.com/profile/14976460220405392152noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-47437696182570702612008-12-04T21:54:00.000-06:002008-12-04T21:54:00.000-06:00Rob. . .<BR/><BR/>So many thoughts run through my head as I read your post. From the bottom of my heart I can relate to what you &amp; Julie are going through. . .can remember all of the thoughts and feelings and fears. Hannah&#39;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&#39;s a reality that we all always live with. . .at any time, any place. <BR/><BR/>Here&#39;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.<BR/><BR/>But first and foremost, find a pediatric neurologist and get the MRI and EEG. One place to consider if you don&#39;t already have a pediatric neurologist lined up is Texas Child Neurology. It is on Coit between Park and 15th. We&#39;ve been with them for the three years that we&#39;ve been in Texas.<BR/><BR/>Anti-seizure meds are very potent and each have a list of potential side effects as long your arm. We&#39;ve had one that mentally slowed her down, one that started to send her into a depression and the latest one. . .the one that&#39;s controlling her seizures. . .has caused her to gain weight. The side effects have been as challenging to deal with as the seizures.<BR/><BR/>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. <BR/><BR/>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.<BR/><BR/>Annie B.Annie B.http://www.blogger.com/profile/17892851435798575887noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-32763984286350485002008-12-04T19:55:00.000-06:002008-12-04T19:55:00.000-06:00The 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.<BR/><BR/>Don't beat yourself up. Just keep being your big hearted self.<BR/><BR/>Melody PlatzMelodyhttp://www.blogger.com/profile/01288615396524315085noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-57325310329295160812008-12-04T19:07:00.001-06:002008-12-04T19:07:00.001-06:00You'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.Special Needs Mamahttp://www.blogger.com/profile/01995668005241526484noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-91812772023355319932008-12-04T19:07:00.000-06:002008-12-04T19:07:00.000-06:00I 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.Loves Pickleshttp://www.blogger.com/profile/09265109812385130053noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-75704707883735681092008-12-04T18:51:00.000-06:002008-12-04T18:51:00.000-06:00At 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.Rahneenoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-10620928140971201032008-12-04T18:49:00.000-06:002008-12-04T18:49:00.000-06:00I'm so sorry. Knowing it may happen someday doesn't make it any easier when it does happen.Karenhttp://www.blogger.com/profile/09037928148778848386noreply@blogger.com