#focalcorticaldysplasia

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All she wants to do is listen to her favorite band @suicidesilence She was trying to feed them her fries earlier lol #teamaria #youcantstopme #epilepsyawareness #epilepsywarrior #resectionsurgery #focalcorticaldysplasia

[hashtagteamaria]

Update 10:39pm 7/16/15

Still no seizures to report, and as Dr. Clancy called it, no “silent seizures” to report (as in no physical symptoms). Plan is the same, she didn’t get Trileptal today, and if when they read the EEG in the morning and there’s no seizures, then they’ll take away the Topamax. The surgery is still scheduled for tomorrow afternoon, but if there are no seizures, they’ll postpone the surgery until we’re able to capture a few seizures and pin point where they’re coming from. Now, I know for some it may be confusing as to what the purpose of this procedure is, and why we would continue if she’s not having seizures. Epilepsy, in Aria’s case, isn’t something that just disappears. Was there a chance she could’ve grown out of it? Yes, but when she broke through and quickly escalated in severity this past winter, her chances of growing out of it grew slimmer. Aria has what is called Focal Cortical Dysplasia with possible Polymicrogyria. Your brain is made up of many large folds of tissue, and Aria’s brain, specifically the right hemisphere in the rear (temporal, occipital, & parietal lobes), Aria has many many tiny little folds, and the cortex didn’t form properly, essentially causing misfires. Because of these areas of dysplasia, the brain waves are always abnormal. That doesn’t mean she’s constantly having a seizure, just that that area of the brain isn’t working right, to put it simply. And as far as her not having seizures as we take her off medications, it’s completely normal to see a decrease in activity after 'handling' the brain; like waiting for the water to boil. Once we capture a few seizures and can perform the lobectomy, Aria will much better off than before. Below are links to information about Aria’s form of epilepsy and treatment: http://www.ncbi.nlm.nih.gov/pmc/articles/ https://en.m.wikipedia.org/wiki/Cortical_dysplasia

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Aria's favorite game, throw things to make Mommy pick it all up lol #teamaria #teamemu #epilepsywarrior #epilepsysurgery #epilepsyawareness #focalcorticaldysplasia #craniotomy #brainsurgery #neurosurgery #chop #childrenshospital #philadelphia

[hashtagteamaria]

I forgot I downloaded the Uncle Sarah app ages ago, and it's hilarious. Peek-a-boo and song-along is a hit lol @sarahkatesilverman Update: No seizures over night, so they held her morning dose of Trileptal. Hopefully we can capture some seizures today and keep surgery on the books for tomorrow. It's a catch 22, cross your fingers she has seizures so they can perform the #lobectomy and fix her brain. #teamaria #teamemu #epilepsywarrior #epilepsysurgery #epilepsyawareness #focalcorticaldysplasia #craniotomy #brainsurgery #neurosurgery