tag:blogger.com,1999:blog-2811189992135134605.post302279566284281279..comments2024-01-24T09:55:51.044-06:00Comments on Elvis Sightings: About the seizuresJoyMamahttp://www.blogger.com/profile/15073328328434957851noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2811189992135134605.post-41686443043405377222008-08-05T09:19:00.000-05:002008-08-05T09:19:00.000-05:00niksmom - it is SO hard to know what is meds and w...niksmom - it is SO hard to know what is meds and what is symptom... sounds like Nik is on a much better track recently though.<BR/><BR/>Mama Mara - "big blue lippers" - good term - glad your guy's not having those now! As for VNS, I've heard of it, but it hasn't come up officially, maybe because it would be years away. I'll have to re-file it for future reference, though.<BR/><BR/>Trish - the first couple of times we see something new are mighty scary. It's amazing what you can get used to though.<BR/><BR/>rhemashope - I've been thinking about you & Rhema, and hoping that as the days go by, this latest med is more helpful and less disruptive for her!JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-65728413097605089512008-08-04T20:09:00.000-05:002008-08-04T20:09:00.000-05:00thanks for sharing about joy's seizures. i can ce...thanks for sharing about joy's seizures. i can certainly relate to the roller coaster aspect of it. we're also in the middle of trying to figure out the best meds for rhema. just started a new one this weekend, and it's making her pretty sluggish. but honestly, sometimes i don't know if her behavior is the result of a seizure or the med!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-51000492681005521342008-08-04T19:06:00.000-05:002008-08-04T19:06:00.000-05:00Thanks for the information about seizures. I'm so...Thanks for the information about seizures. I'm sorry to hear that they have come back and are still happening. It must be a very scary experience.Trishhttps://www.blogger.com/profile/17681523260739807543noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-44569902012786070672008-08-03T10:15:00.000-05:002008-08-03T10:15:00.000-05:00We got lucky with our third medication, and though...We got lucky with our third medication, and though my son has small spikes several times a day, no (wood/avert) big blue-lippers, as I call them. Has your neurologist talked with you at all about Vagus Nerve Stimulation down the road? My son's almost old enough, and it may be an option if his current med (more wood) stops working.mama edgehttps://www.blogger.com/profile/16434016248126809607noreply@blogger.comtag:blogger.com,1999:blog-2811189992135134605.post-56654965672496219392008-08-03T08:18:00.000-05:002008-08-03T08:18:00.000-05:00definitely touching wood and said a prayer for no ...definitely touching wood and said a prayer for no ER visits! we almost had a few of those when nik was still in school and fell head first into a concrete wall. school staff couldn't exactly tell if it was a seizure (his are absence/petit mal) so they didn't tell us about them until the end of the day. (one of many reasons we pulled him out of school last year!)<BR/><BR/>we also went through a nightmarish 18 or so months when his combo of meds was causing such horrible side effects; no one (including his now-former neurologist) realized it was the meds so they kept throwing more meds at the problem to releive symptoms---only to make it worse. we're back down to one med being increased and the second being weaned...and seeing such fantastic diffrences in nik's alertness, coordination, social interaction, etc. he's still autistic but he's functioning much better on a day to day basis! And the mysterious pain he used to have (from the meds!) is GONE.Niksmomhttps://www.blogger.com/profile/14715465327343655483noreply@blogger.com