Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Hi ladies, really enjoying reading your threads...you are both smarties!! I'm curious about the vitamins increasing seizures for Skyler, they do for Jake too, which is a bit of a stumbling block when it comes to the mito stuff. What do you make of it, if anything? I put Jake back on carnitor last night, figuring it wouldn't make things worse. Drop seizures on the rise this week....always something, huh. Wishing you both a good day. Barb Swoyer, Jake's mom Skyler has always been on carnitine while on the keto diet and was started on it that last fateful time we tried the Depakote (a known mitochondrial toxin). Of course, we've also tried the 'mito cocktail' of anti-oxidants, CoQ10, etc. but supplements have never set well with him <always causing an inc. in sz: heck, I was worried about the stupid multi-vitamin he takes now, on the diet> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Oh, Barb- You are so silly! But glad to be 'entertaining,' nonetheless. Don't know what to make of the vitamin thing...'s son Zach from another list has the same issue...as does at least one other kid I know of. I figure some vitamins do cross the blood/brain barrier and our kids' brains are hyper sensitive and excitable and just throw another wrench into the gears. Not real scientific, huh? Any more mito findings? I sent a bunch of stuff to the various lists. Hope they were remotely helpful. You know, some docs are POSITIVE Skyler has a mito disorder. He had one southern blot DNA study that showed mitochondrial deletions. But they always re-run it, and the second and third time, it came up w/nothing. There's a Mito Research center almost in my back-yard (at UCSD) but for years patients came and got their muscle biopsies or DNA analyzed and came up without diagnoses....ONLY to have Emory < Shoffner, MD> re-run the same tests and get a diagnosis. Go figure. Has Jake ever been on MCT Oil? Has he ever been on the MCT/Keto diet...where long chain fat is limited to 10-11% of the days' total calories? If nothing else, that version of the diet affords the kids a lot more carbs. We started this venture on the 'Hopkins' version and Skyler went through HELL: protein spillage in the urine, tachycardia, vomiting, EXTREME lethargy. A mito-man blamed all the long chain fats and we switched right over to the MCT version. VOILA...all the *bad* stuff virtually disappeared yet ketosis remained strong. Just a thought... Sorry to hear about the frigging drops. Helmet time, I presume? (We got Skyler the same one Jake has. It's currently in the closet for now...) Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Oh, Barb- You are so silly! But glad to be 'entertaining,' nonetheless. Don't know what to make of the vitamin thing...'s son Zach from another list has the same issue...as does at least one other kid I know of. I figure some vitamins do cross the blood/brain barrier and our kids' brains are hyper sensitive and excitable and just throw another wrench into the gears. Not real scientific, huh? Any more mito findings? I sent a bunch of stuff to the various lists. Hope they were remotely helpful. You know, some docs are POSITIVE Skyler has a mito disorder. He had one southern blot DNA study that showed mitochondrial deletions. But they always re-run it, and the second and third time, it came up w/nothing. There's a Mito Research center almost in my back-yard (at UCSD) but for years patients came and got their muscle biopsies or DNA analyzed and came up without diagnoses....ONLY to have Emory < Shoffner, MD> re-run the same tests and get a diagnosis. Go figure. Has Jake ever been on MCT Oil? Has he ever been on the MCT/Keto diet...where long chain fat is limited to 10-11% of the days' total calories? If nothing else, that version of the diet affords the kids a lot more carbs. We started this venture on the 'Hopkins' version and Skyler went through HELL: protein spillage in the urine, tachycardia, vomiting, EXTREME lethargy. A mito-man blamed all the long chain fats and we switched right over to the MCT version. VOILA...all the *bad* stuff virtually disappeared yet ketosis remained strong. Just a thought... Sorry to hear about the frigging drops. Helmet time, I presume? (We got Skyler the same one Jake has. It's currently in the closet for now...) Tracey Quote Link to comment Share on other sites More sharing options...
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