Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Liz, What kind of seizures is Gillian having? Lisette (3) can have dozens of myoclonics in an hour. Even on the diet she has a lot of them the first 1 to 2 hours in the morning. Every one is like a knife in our hearts. When they're frequent, she acts wierd between the seizures. When we do the monitored EEG they tell us to stop pushing the button after the first hour or so. Fortunately, she hasn't had true " status. " Hopefully, the doctors will soon figure out what's causing Gillian's increase. Maybe she has a virus. Maybe you can find someplace to actually get out your %%$ & & #### scream. It would probably help. Neil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Niel, Gillian has myoclonic epilepsy so she has siezures ranging from a twitch to a drop but she's also having complex partials just about constantly. Its the partials that are so resistant even to the diastat. They just drew blood to check to see if the valproic acid is in a theraputic (spelling??) range yet. Her other blood work on Tuesday showed no sign of illness. So I guess we will here soon what's next. There's no change this morning. If anything Thursday and Friday she was worse. She can't even play in the playroom for more than a minute. She just crawls up on my lap and puts her head on my chest and siezes and siezes......... Are blood ketones usually higher or lower than urine ketones?? Has anyone ever heard of IVIG (IV immuno globulin) for epilepsy? Just were my research has lead me this week. Wondering if anyone else has researched this topic??? I'll check back soon. Liz > Liz, > > What kind of seizures is Gillian having? > > Lisette (3) can have dozens of myoclonics in an hour. Even on the > diet she has a lot of them the first 1 to 2 hours in the morning. > Every one is like a knife in our hearts. When they're frequent, she > acts wierd between the seizures. When we do the monitored EEG they > tell us to stop pushing the button after the first hour or so. > Fortunately, she hasn't had true " status. " > > Hopefully, the doctors will soon figure out what's causing Gillian's > increase. Maybe she has a virus. Maybe you can find someplace to > actually get out your %%$ & & #### scream. It would probably help. > > Neil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 While I can't answer that exactly, I can share that I heard from her last week and she said they returned home from vacation just in time to have a major wildfire in the area of her home! So besides all the stuff one has to deal with after vacation, and in her case, getting back into (IE) coaching work, she and her hubby have other challenges to get in order before she can carve out some time to get caught up here. She sends her BEST wishes until then Katcha > PS guys, when does Gillian get back? > Quote Link to comment Share on other sites More sharing options...
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