Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Talked to the nurse friday re: stella's rough times, she is scheduled for a muscle/skin biopsy to rule out any problems and especially to rule out mitochondrial disease.,Her lamictal was increased much to my dismay, and she's going in for a 24 hour eeg to see what exactly is going on. I always want the eeg when I know she's having lots of seizures, knowing our luck with all this weaning/finetuning with the diet, she'll have no seizures when she goes in, which don't get me wrong is wonderful, however I sure wish the docs could see her like this. She's also due for another MRI, which will happen shortly before her VNS is put in. I guess her plateletts are somewhat low, so that is of concern before going under general anthesia. So all is all, no good news, but atleast they have some sort of a plan for her. I did e-mail her epi, he's away at a conference so he'll get it Monday, so I'm hoping to get some answers then. We've dropped her ratio to a 3.75-1, still using the MCT oil but not at every meal. I've seen a slight decrease in her seizures, but only slight, as I still count over 50 drops/myoclonics/and those pesky complex partial twitches, starring spells. Her interest in food, is still awful, she flat out refuses to eat, breakfast is the worst. So far only 3 drops this am, so I'm hoping she'll have a better day, my back is sure aching after carrying her around all day yesterday, 40lbs is a lot after a while. -- Stansfield-mom to Stella age 5 1/2, started the keto diet May 10th, 2004 still awaiting her miracle. On lamictal and diamox, just finished weaning diazepam. Also, big sis Anisa, who is healthy and about to turn 10. Quote Link to comment Share on other sites More sharing options...
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