Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 My son is 15 kg and we give him 330 mg 2xday. Per our neuros prescription. Who knows if he knows what he is doing, but... Weve had no side effects. Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Dear ine Good on you mate. We will teach them slowly. I hope you find the info you need on levels on the net because it sounds to high to me too. Louise of NZ, Mother of Kian now an angel. > carnitine > > > > Dear All > > We finally have the blood test results for 's carnitine levels back > and they are extremely low! I find it so frustrating that I have been > fighting to have this test done for so long and the Dr. finally relented > just to shut me up. > > Anyway does anyone know how much we should be supplementing with - the > dietician said 100mg /kilo and since weighs 14.5 kilos that would > be a bucketload of carnitine. Does anyone have these amounts? > > thanks for your help > ine (NZ mother to 9, 7, 2 1/2 blind, complex > partial seizures and developmental delay ) > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 You wrote... Subject: carnitine Dear All We finally have the blood test results for 's carnitine levels back and they are extremely low! I find it so frustrating that I have been fighting to have this test done for so long and the Dr. finally relented just to shut me up. Anyway does anyone know how much we should be supplementing with - the dietician said 100mg /kilo and since weighs 14.5 kilos that would be a bucketload of carnitine. Does anyone have these amounts? thanks for your help ine (NZ mother to 9, 7, 2 1/2 blind, complex partial seizures and developmental delay ) ****My 4 1/2 year old daughter weighed 14.5 kg when starting the diet and is supplemented with Carnitor (Rx from Sigma Tau), which has 330mg per pill. She gets 4 a day, which works out to 90 mg/kg. I hope your insurance will cover it as it is a bit expensive. I could not fine a carbo free over the counter supplement, and it was not recommended by my keto team anyway. Hope this helps , mom to Ally (ketokid since 4/01) and Lexi (1) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Hi, I believe I recall that the dosage recommendation is to start with 50 mg per kilo of body weight and you can go up to 100mg per.... or maybe it's even higher than that. Watch for diahrrea or stomach cramps. Patti, mom to Katera carnitine Dear AllWe finally have the blood test results for 's carnitine levels backand they are extremely low! I find it so frustrating that I have beenfighting to have this test done for so long and the Dr. finally relentedjust to shut me up.Anyway does anyone know how much we should be supplementing with - thedietician said 100mg /kilo and since weighs 14.5 kilos that wouldbe a bucketload of carnitine. Does anyone have these amounts?thanks for your helpine (NZ mother to 9, 7, 2 1/2 blind, complexpartial seizures and developmental delay ) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 ine, My daughter takes 1 330mg tablet of Carintor a day> She is 11kg and we give 1/2 am and 1/2 pm. But her carintor levels have never tested low. They started her on it when she started Depakote so that may be the difference in the dosage, I'm not sure but I agree 100mg/kilo sounds like alot! Good luck! Jeni, mom to MaKenzie 2 1/2 & Bo 5 carnitine > > Dear All > > We finally have the blood test results for 's carnitine levels back > and they are extremely low! I find it so frustrating that I have been > fighting to have this test done for so long and the Dr. finally relented > just to shut me up. > > Anyway does anyone know how much we should be supplementing with - the > dietician said 100mg /kilo and since weighs 14.5 kilos that would > be a bucketload of carnitine. Does anyone have these amounts? > > thanks for your help > ine (NZ mother to 9, 7, 2 1/2 blind, complex > partial seizures and developmental delay ) > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 I understand the carnitine dose is 50-100mg/kg Gaby uses 100mg/kg without any ill effects ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 RICHARD HILL wrote: Hi, when we started the diet on 3rd Sep, there was a worldwide shortage of 'ketovite', so we got sent home on 1 teenage multi per day, and half a calcium sandos tablet. Okay, I give.....what is ketovite?? biopsies etc for us, but nothing conclusive was found. When had his 'weird' reaction when starting the diet, I had a long phone conversation with him, he still doesn't think there is a lot more he can test for. What was the "wierd reaction" when the diet was started? Just wondering cuz our daughter had one too , 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 Dear Sue We (the mothers) learned of issues of carnitine off the net and then informed to dieticians because they didn't know it was could be a problem. I have never really understood lipid levels but I think it is to do with colesterol. Liver function tests should be done every now and then as well. I was wondering if Jack would do better with 3 meals a day and a two snacks inbetween. I am suprised that he is only on three meals after the way he used to eat. And I like the suggestion that low sugar levels may be causing his alertness problems in the morning. You are doing really well mate, keep up the good work. Louise of NZ, Mother to Kian now an Angel. > Re: carnitine > > > Hello to other New Zealand Mums > Carnitine testing has never been mentioned to us, or anything > else for that > matter. We have been sent home from Auckland (we're in New Plymouth) just > told to see our dietitian weekly for a weight check and the weekly chart > filled in with ketone readings etc. Something was mentioned about monthly > blood tests for cholesterol, but our Paed. knew nothing about these tests > last time we spoke to him (he knows bugger all about the keto diet). Jack > is having Aminogran, Ketovite syrup and Ketovite tablets daily. > , what > do you mean about the ketovite " when available " ? > > Sue > carnitine > > > > > > > > > > Dear All > > > > > > We finally have the blood test results for 's carnitine > levels back > > > and they are extremely low! I find it so frustrating that I have been > > > fighting to have this test done for so long and the Dr. > finally relented > > > just to shut me up. > > > > > > Anyway does anyone know how much we should be supplementing with - the > > > dietician said 100mg /kilo and since weighs 14.5 kilos > that would > > > be a bucketload of carnitine. Does anyone have these amounts? > > > > > > thanks for your help > > > ine (NZ mother to 9, 7, 2 1/2 blind, complex > > > partial seizures and developmental delay ) > > > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > > resort! " > > > > > > List is for parent to parent support only. > > > It is important to get medical advice from a > professional > > keto team! > > > Subscribe: ketogenic-subscribe > > > Unsubscribe: ketogenic-unsubscribe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 Hi , Ketovite tablets and Ketovite liquid, along with Aminogran Powder are the vitamin and mineral supplements Jack has to take while on the keto diet. I assumed that everyone, no matter where you live, was on these. Sue (NZ) - Mum to Jack 3 1/2 (keto kid 09/01) and Molly 19 months Re: carnitine RICHARD HILL wrote: Hi, when we started the diet on 3rd Sep, there was a worldwide shortage of 'ketovite', so we got sent home on 1 teenage multi per day, and half a calcium sandos tablet.Okay, I give.....what is ketovite?? biopsies etc for us, but nothing conclusive was found. When had his 'weird' reaction when starting the diet, I had a long phone conversation with him, he still doesn't think there is a lot more he can test for.What was the "wierd reaction" when the diet was started?Just wondering cuz our daughter had one too , 's mom "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 I've never heard of any of these and would be curious as to what's in them, who the manufacturer is, etc. Although, I'm a bit dubiuos of medical recommendations on vitamins. . .especially when they routinely recommend sugar-free Bugs Bunny -- a lousy vitamin that contains NutraSweet, which for many is a neuro-toxin. Sorry to say it that bluntly. . . but I'm not sure I'm over the shock at realizing how clueless they really are about good nutrition!--D --- Trent & Sue Senior wrote: > Hi , Ketovite tablets and Ketovite liquid, > along with Aminogran Powder are the vitamin and > mineral supplements Jack has to take while on the > keto diet. I assumed that everyone, no matter where > you live, was on these. > > Sue (NZ) - Mum to Jack 3 1/2 (keto kid 09/01) and > Molly 19 months > Re: carnitine > > > RICHARD HILL wrote: > Hi, when we started the diet on 3rd Sep, there > was a worldwide shortage of > 'ketovite', so we got sent home on 1 teenage > multi per day, and half a > calcium sandos tablet. > Okay, I give.....what is ketovite?? > > biopsies etc for us, but nothing conclusive was > found. When had his > 'weird' reaction when starting the diet, I had a > long phone conversation > with him, he still doesn't think there is a lot > more he can test for. > What was the " wierd reaction " when the diet was > started? > Just wondering cuz our daughter had one too > , 's mom > Quote Link to comment Share on other sites More sharing options...
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