Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 sorry guys, this is going to be a long one, i need to gripe. Yesterday was a tough day for Stella had to work so hubby was with her, she refused to eat, which she has been doing for quite some time now, but when she did eat she would throw it up. Her seizures were still continuing, and she was unresponsive for most of the day, her sister was the only one who could manage to get any food in her. She would eat one or two bites then up it would come. So, when I got home I called the dietician and we agreed that maybe w/ the MCTon board she might be too ketotic, since I don't have my blood keytone machine yet, i was unable to check, so she suggested i give her some OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per meal. she did eat dinner, and continued to gag, but nothing came up thank goodness. I am so frustrated with our team here in seattle, the dietician is supportative though has no more suggestions, she is just too inexperienced. The Nurse practicioner whom we contact to get info from has not responded to my calls, he was supposed to set up her VNS apt, and no response. I did email her epi last night, so i am eagerly awaiting a response from someone soon. So a couple questions. Now that the diazepam is gone, how long did it take those of you out there to notice a change with the diet. I am scared her body needs the benzo to help control the seizures, but then looking back they didnt' do anything at all. I did ask her epi to give me a schedule to wean her off all meds, and just try the diet by itself. We are pros now with the diastat, so if need be we can give her that. What to do. I know most of you have noticed improvement in a short period of time, but is 3 months too soon to tell? There is definitly something neurologicaly going on though because her hands are curling and always lifted up rather than by her side. Her drops yesterday were face forward rather than backwards, so yet again her seizures have shifted. AAAHHH-- Well i 'd best get some work done, i'm on location shooting today for Microsoft, so i'm using their computer. Stansfield Quote Link to comment Share on other sites More sharing options...
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