tag:blogger.com,1999:blog-22878815.post6056191137790814848..comments2009-01-16T10:05:31.368-06:00Rob Rummel-Hudsonhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-22878815.post-10163885686296998222009-01-16T10:05:00.000-06:002009-01-16T10:05:00.000-06:00K had diffuse slowing on her EEG, though, we've never caught any actual seizure activity, not even on her 48 hour EEG. We were in-patient for that one...nothing like having a two year old tethered to a wall. Joyful. ;)<BR/><BR/>All the many answers that are grey. We are notorious for getting abnormal but nonspecific results. We just expect it now, kind of like a running joke that isn't all that funny, when you think about it.Kylahttp://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-9259750826873524962009-01-08T12:26:00.000-06:002009-01-08T12:26:00.000-06:00Robert, hi. I'm with you on not looking too hard for black and white answers. I just put up a post today on the hard lessons I learned about dealing with a special-needs kid, one of which was to toss the books about developing. You always have such a good handle on things, I'd appreciate your weighing in. Post is at http://lovethatmax.blogspot.com/2009/01/what-i-wish-id-known-when-max-was-baby.htmlEllenhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-77174190278163547662009-01-07T13:19:00.000-06:002009-01-07T13:19:00.000-06:00I'm sorry you didn't get quite the answers you were hoping to get...in our experience with Chris, ANY brain that is not formed 'properly' will have abnormal waves. (typically 'slowing' of waves in a particular area of the brain)<BR/><BR/>My 9 year old has migraines with some visual disturbances, and her 'normal' EEG has some 'slowing' of waves in the occipital lobe. Chris' abnormal waves are typical of an epileptic brain. The electricity is just not firing in perfect order.<BR/><BR/>I suspect you may find much of the same with the 48 hour recording. Hopefully you can catch an actual 'space episode' though and get it recorded. That is key.<BR/><BR/>Chris spent 8 days in the hospital a couple of years ago, we took away his medicine, trying to provoke a seizure that could be recorded. It took 7 days for him to have one - where he had been having them daily, WITH medication, prior to the hospital stay. Go figure - the brain is a goofy thing.<BR/><BR/>Good luck, we'll be thinking of you all.<BR/><BR/>CyndiAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-4867234013773901152009-01-06T21:45:00.000-06:002009-01-06T21:45:00.000-06:00Of course, I cried reading this...so funny how your description brings up many sad memories of waiting during appointments and tests and hospitalizations...wondering what the world is going to hurl at top speed into Mason's face next. There's Nothing Worse than watching your kid go through tests. Nothing. I hope gray is enough for you....I somehow sense it won't be. But, kudos for being strong in the face of all of this. I hope Schuyler is recovered before starting the next one. ARGH, I say.Monroegirlhttp://www.blogger.com/profile/17040787502614347664noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-30816771788618493032009-01-06T20:21:00.000-06:002009-01-06T20:21:00.000-06:00Ohhh, that picture of Schuyler made me tear up. I hope she feels better now!<BR/><BR/>I had to have several EEGs as a child and they were definitely not fun. <BR/><BR/>I hope the goo is easier to remove from hair than it was 15 years ago, but I doubt it. My clearest memory of the EEGs is trying to get that gunk out of my hair with about 20 gallons of shampoo!Quill2006http://www.blogger.com/profile/10097526801571036393noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-90871547481554948442009-01-06T19:42:00.000-06:002009-01-06T19:42:00.000-06:00Oh, that picture! Poor Schuyler! Poor... all of you, really. I can't imagine what you are going through. I can only hope that you will get some answers soon - good answers. Hang in there.Sarah Wnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-51970619698587156122009-01-06T14:46:00.000-06:002009-01-06T14:46:00.000-06:00I hate grey. I always want black or white, but you're right -- grey is better than black, in a way. I hope the next one is not so traumatic.Hnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-12069333575325942182009-01-06T12:46:00.000-06:002009-01-06T12:46:00.000-06:00Thinking of you guys. It's tough when the cloud's lining is grey instead of silver.<BR/><BR/>Schuyler's a trooper, that's for sure.krishttp://www.blogger.com/profile/03000832911239038894noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-76379331240119160882009-01-06T12:26:00.000-06:002009-01-06T12:26:00.000-06:00I'm so sorry. Please let her know that we are thinking of her.Karenhttp://www.blogger.com/profile/10167975377269696346noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-26489863976223698902009-01-06T12:01:00.000-06:002009-01-06T12:01:00.000-06:00In a perfect world, I would not even know that Schuyler existed. Her broken mind would be fixed and she would not have these monsters to contend with. However little help this brings, I want you and her to know that her strength is giving strength to others. Schuyler is an amazing little girl, as well you know and this is not some religious rant. This is just another broken human being who is marveled at her tenacity and will power. After reading your blog for so long, I felt now was the right time to comment. Schuyler you are brilliant. Do not let anyone ever tell you differently, not that you would :) Keep on battling through and scream and shout and cry when you need to but always end smiling, just like you do. You too Rob. And, after what she has been through I am not surprised about the angry tears. Schuyler is entitled to them more than anyone.Jessnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-30655800012337687612009-01-06T11:04:00.000-06:002009-01-06T11:04:00.000-06:00Yes, of course she remembers...as do Julie, and you.<BR/><BR/>There's nothing easy about this...glad she has Jasper, and other assorted monsters, to help her process it. <BR/><BR/>xojenniferggnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-59389726065010080242009-01-06T06:57:00.000-06:002009-01-06T06:57:00.000-06:00Once again, you find the perfect phrase to sum up the heart of the matter. . .for so many of us. . ."we are asking black and white questions and getting gray answers." Pretty much sums up the last dozen or so years for us!<BR/>Glad that this test is over . . .and now back to school and a little normalcy. . .whatever that is.Annie B.http://www.blogger.com/profile/17892851435798575887noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-81792989885645479962009-01-06T05:16:00.000-06:002009-01-06T05:16:00.000-06:00I wish you guys had received a more definitive answer - I guess, in this situation, the "grey" answer is the best one...but I know it's not an answer you can really count on. Thank you for keeping us posted on Schulyer's test - I was wondering how it all went.Amandahttp://www.blogger.com/profile/17272234396737679356noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-40141097635067041042009-01-06T01:40:00.000-06:002009-01-06T01:40:00.000-06:00There's a special kind of post-traumatic stress disorder, I think, that pertains to children with monsters and their parents. I know I've felt it over and over, and I especially appreciate your descriptions of peering into the hole...<BR/>As a recipient of much gray, I feel for you. It's just plain, well, gray.Elizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.com