Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 -- my child is 60 lbs and was prescribed 750/ day. I actually give him a little more. one 250 in the AM, one 250 mid-day, and one 330 at night with the heavy Depakote dose. Haven't seen any adverse effects. When he wasn't taking it, he was very lethargic, spacey, zombie-like and his ammonia levels were abnormally high. I've never had a carnitine level checked. Maybe someone else knows more about this. Jane Carnitine Questions If I want to start my child on Carnitine, what dose should I start? She is 11 years old and 69 pounds. How important is it to have Carntitine levels checked? If I recently had blood work done, what would I look for? Might I expect this to increase her alertness and energy? What negative side effects might I see? Thanks, " 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 June 28, 2002 Report Share Posted June 28, 2002 Carnitine and carnosine are two completely different amino acids...... carnosine is not just " special " carnitine. When Katera was put on a trial of Carnitor (prescription carnitine), she had awful diahrrea. It wasn't helping in any other way so we stopped. I am now giving her carnosine..... but it's for cognitive gains and supporting seizure control.... carnitine is given for different reasons, as I remember. patti Re: Carnitine Questions We just saw our neuro yesterday and asked about carnitine. He was wishy-washy about whether it had any beneficial effects, but said he'd be glad to write us a prescription for it. He said the body does not hold on to it (comes out in urine) so it is certainly harmless to try. He personally doubted there was a great difference between the special " carnosine " and regular carnitine, but there would be nothing harmful in that either. So we'll be trying it! That's my only info.... ashley (mom to , age 4, autism, non-verbal, LGS, keto kid since 5/13/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 We just saw our neuro yesterday and asked about carnitine. He was wishy-washy about whether it had any beneficial effects, but said he'd be glad to write us a prescription for it. He said the body does not hold on to it (comes out in urine) so it is certainly harmless to try. He personally doubted there was a great difference between the special " carnosine " and regular carnitine, but there would be nothing harmful in that either. So we'll be trying it! That's my only info.... ashley (mom to , age 4, autism, non-verbal, LGS, keto kid since 5/13/02) ---------- To: <ketogenic > Subject: RE: Carnitine Questions Date: Thu, Jun 27, 2002, 8:34 PM -- my child is 60 lbs and was prescribed 750/ day. I actually give him a little more. one 250 in the AM, one 250 mid-day, and one 330 at night with the heavy Depakote dose. Haven't seen any adverse effects. When he wasn't taking it, he was very lethargic, spacey, zombie-like and his ammonia levels were abnormally high. I've never had a carnitine level checked. Maybe someone else knows more about this. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Jane and others using Carnitine, I know many of you are using Carnitore, and others are using store bought brands...we bought GNC L-Carnitine and it is listed " as L-Carnitine Fumarate " . This is the 250mg dose, I noticed the same brand's 500mg is a different kind...Molly seems to be having a reaction to the Carnitine supplement we are giving..she has more tics just before she falls asleep and is having an awful time getting to sleep. I was wondering if people can check their carnitine and let me know what it says in " supplement facts " is the type of carnitine, also, if anyone can recommend a brand. I know typically GNC is not the best brand for supplements, but there was not other ingredients in this, which was why we got it. Even though she is having these adverse reactions, I feel she can benefit from this supplement, the doctor even mentioned it to us because her carnitine levels were borderline low, though she didn't end up writing us the script for Carnitore. (which kind of Carnitine is carnitore?) Thanks for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Carnitor is only available by prescription and, according to our dietician, is the only type of carnitine you should supplement Keto kids with. I don't remember the reasons why.... there is supposedly some difference between this and the over-the-counter brands. Patti Re: Carnitine Questions Jane and others using Carnitine, I know many of you are using Carnitore, and others are using store bought brands...we bought GNC L-Carnitine and it is listed " as L-Carnitine Fumarate " . This is the 250mg dose, I noticed the same brand's 500mg is a different kind...Molly seems to be having a reaction to the Carnitine supplement we are giving..she has more tics just before she falls asleep and is having an awful time getting to sleep. I was wondering if people can check their carnitine and let me know what it says in " supplement facts " is the type of carnitine, also, if anyone can recommend a brand. I know typically GNC is not the best brand for supplements, but there was not other ingredients in this, which was why we got it. Even though she is having these adverse reactions, I feel she can benefit from this supplement, the doctor even mentioned it to us because her carnitine levels were borderline low, though she didn't end up writing us the script for Carnitore. (which kind of Carnitine is carnitore?) Thanks for your help, " 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 June 28, 2002 Report Share Posted June 28, 2002 Carnitor is the brand name for the prescription L-Carnitine. The main problem with it is that it only comes in the 330mg size so that if you need, lets say, 750 day, its easier to give the over the counter 250 mg capsules 3 X/day. My pharmacist says that there isn't any difference between pure L-Carnitine and Carnitor as long as its a reputable brand. I've recently been using the NOW and TwinLabs brands, but pre-diet used a liquid that was equally effective. I'm looking at the TwinLab bottle and there's nothing in it besides L-Carnitine, and a bit of calcium and phosphate. The Carnitor is pure levocarnitine. (Don't confuse with the liquid though which has artificial colors and a lot of sucrose.) As far as GNC is concerned, they are actually very good on some supplements, less good on others. Its really individual. A psychiatrist I know at Columbia who wrote a book on SAM-e says there's is the best -- as well as one of the least expensive. Hope this helps. Don't know why it should increase seizures but maybe you have to titrate up slowly. Jane Re: Carnitine Questions Carnitor is only available by prescription and, according to our dietician, is the only type of carnitine you should supplement Keto kids with. I don't remember the reasons why.... there is supposedly some difference between this and the over-the-counter brands. Patti Re: Carnitine Questions Jane and others using Carnitine, I know many of you are using Carnitore, and others are using store bought brands...we bought GNC L-Carnitine and it is listed " as L-Carnitine Fumarate " . This is the 250mg dose, I noticed the same brand's 500mg is a different kind...Molly seems to be having a reaction to the Carnitine supplement we are giving..she has more tics just before she falls asleep and is having an awful time getting to sleep. I was wondering if people can check their carnitine and let me know what it says in " supplement facts " is the type of carnitine, also, if anyone can recommend a brand. I know typically GNC is not the best brand for supplements, but there was not other ingredients in this, which was why we got it. Even though she is having these adverse reactions, I feel she can benefit from this supplement, the doctor even mentioned it to us because her carnitine levels were borderline low, though she didn't end up writing us the script for Carnitore. (which kind of Carnitine is carnitore?) Thanks for your help, " 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 June 29, 2002 Report Share Posted June 29, 2002 Re the carnosine, we tried the Now brand. It's always 's Law with us! My son had partial sz with it and we stopped. It was like stopping an AED abruptly, had long partial sz; the type we saw when weaning vigabatrin. Only one other child had a negative response like this. Saro..... Rohan's mum Re: Carnitine Questions > > > We just saw our neuro yesterday and asked about carnitine. He was > wishy-washy about whether it had any beneficial effects, but said he'd be > glad to write us a prescription for it. He said the body does not hold on to > it (comes out in urine) so it is certainly harmless to try. He personally > doubted there was a great difference between the special " carnosine " and > regular carnitine, but there would be nothing harmful in that either. So > we'll be trying it! That's my only info.... > ashley > (mom to , age 4, autism, non-verbal, LGS, keto kid since 5/13/02) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Carnitor is the brand made by Sigma Tau (Italian). Here in the UK we have to have a dr.'s prescription for it. It is supposed to be the best for treating a carnitine deficiency. Rohan used it and we saw higher ketones and he was getting back to normal in the speed of doing things. He had slowed down over an year or so. I think there was a reduction in sz too (he is not sz-free). Saro....mum to Rohan (13.5 yrs, on KGD from 02/00, med-free for 1.5 yrs, but now on Diamox since 6/6/02) Re: Carnitine Questions > Jane and others using Carnitine, > I know many of you are using Carnitore, and others are using store bought > brands...we bought GNC L-Carnitine and it is listed " as L-Carnitine > Fumarate " . This is the 250mg dose, I noticed the same brand's 500mg is a > different kind...Molly seems to be having a reaction to the Carnitine > supplement we are giving..she has more tics just before she falls asleep and > is having an awful time getting to sleep. I was wondering if people can > check their carnitine and let me know what it says in " supplement facts " is > the type of carnitine, also, if anyone can recommend a brand. I know > typically GNC is not the best brand for supplements, but there was not other > ingredients in this, which was why we got it. > Even though she is having these adverse reactions, I feel she can benefit > from this supplement, the doctor even mentioned it to us because her > carnitine levels were borderline low, though she didn't end up writing us the > script for Carnitore. (which kind of Carnitine is carnitore?) > Thanks for your help, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 You really should only the prescription carnitine, is my understanding. And reading someone else's post, it looks like people are still confusing carnitine and carnosine, two very different things Patti wrote: > Carnitor is only available by prescription and, according to our > dietician, is the only type of carnitine you should supplement Keto > kids with. I don't remember the reasons why.... there is supposedly > some difference between this and the over-the-counter brands. > > Patti > Re: Carnitine Questions > > > Jane and others using Carnitine, > I know many of you are using Carnitore, and others are using store > bought > brands...we bought GNC L-Carnitine and it is listed " as L-Carnitine > Fumarate " . This is the 250mg dose, I noticed the same brand's 500mg > is a > different kind...Molly seems to be having a reaction to the > Carnitine > supplement we are giving..she has more tics just before she falls > asleep and > is having an awful time getting to sleep. I was wondering if people > can > check their carnitine and let me know what it says in " supplement > facts " is > the type of carnitine, also, if anyone can recommend a brand. I > know > typically GNC is not the best brand for supplements, but there was > not other > ingredients in this, which was why we got it. > Even though she is having these adverse reactions, I feel she can > benefit > from this supplement, the doctor even mentioned it to us because her > > carnitine levels were borderline low, though she didn't end up > writing us the > script for Carnitore. (which kind of Carnitine is carnitore?) > Thanks for your help, > > > " 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 June 29, 2002 Report Share Posted June 29, 2002 I agree with the other recent replies on this...I guess based on my other experiences I tend to suspect 'greed' with some companies because Sigma Tau is the only " prescribed " brand.....and wonder if other carnitine is the same thing. I do know there is a difference if you dont get the " L " carnitine barb....s mom On Fri, 28 Jun 2002 19:17:57 -0700 " Patti " writes: Carnitor is only available by prescription and, according to our dietician, is the only type of carnitine you should supplement Keto kids with. I don't remember the reasons why.... there is supposedly some difference between this and the over-the-counter brands. Patti Quote Link to comment Share on other sites More sharing options...
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