Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hi all, it's been ages since I've posted, life has been so hard lately. Stella started the keto diet this year May 10th. It's been awful for her, I think her seizures could not get any worse. She had 2 wonderful weeks seperate of each other with no seizures, but the rest of the time she's been seizing every day. And some days in status. She's due for the vns on the 19th of this month, and i'm just wiped out, i've hit rock bottom with my emotions. Last night while giving stella her bath, I just broke down, her little body which is tiny now she's on the diet, is so beautiful and I can't imagine seeing those nasty scars on her neck and chest, I know it's a chance for her, and it's only chance, but it just kills me that there is nothing else. Our kids who are so beautiful and loving and sweet, and just so innocent have to endure this nasty disability and for stella and those kids who are having such a tough time out there it's just not fair. She had an emergency eeg last friday and it proved she was in status, not TC status but some sub clinical status where she would have periods of no response, her head would droop, she drool, her hands would twich, eyes and eyebrows twitching, her legs or arms may jerk or her head would throw back little myoclonics I guess, then there would be the odd TC thrown in too. They put her on a huge dose of klonopin to try to stop the status which it has done, but now she's a wreck, so emotional, can barely hold her head up, is drooling all the time, cries when I walk out of the room, can barely talk. I swear it's gone from bad to worse. What I wouldn't do to trade places with her and take it all away. So now i trying to figure out if I take her off the diet and let her enjoy food again, or keep her on it with the vns. Her seizures for those of you who don't know anything about her can range from one to over 100 in a day, with regular status events. Sorry about my emotional rambling, amanda Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal and diamox, just weaned diazepam (yippeee). Still waiting for Stella to be seizure free, but she's doing much better. Failed every med available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
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