Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 , I am so excited to hear is going to be 1 year seizure-free soon! Your whole family deserves such a great blessing, and espeically after all he's been through. What a great guy and a great supportive family he has. I'm absolutely thrilled for you! Glad you are seeing a moderation in 's carnitine levels as he comes down off Depakote. That ought to help energy levels. Is the plan to get him off the Dep completely? Yes, we should have 's carnitine levels checked. She had them taken once long before the diet at age 2 (Carnitor was a grasping-at-straws treatment for her syndrome at the time, but our neuroped wouldn't prescribe it unless she was low) and even back then she was high (though I don't know just how much). It would appear to be an odd little metabolic thing with her. Strange, too, because there have been times in her life when meat was pretty non-existent in her diet and still carnitine levels were excessive. But right now I am limiting her blood draws to only those that might be urgent...after monthly checks for the keto diet, she's gotten awfully leery of pokes. Can't blame the kid. I do think a year of seizure-free is about the best Christmas present a parent could ever wish for! You certainly deserve it. Merriest of Christmases! Rose-Marie, mom to , age 8, Maple Valley, WA USA Quote Link to comment Share on other sites More sharing options...
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