Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Yes, that is what I think about the warning the carnitine supplement carries - it can indeed cause a seizure increase - but Sigma Tau themselves admit when asked, that they have never gone any further down the track as to 'why'. Just that because there were cases reported, especially in those who already had seizures, they were legally obliged to include it in the product warning. Stands to reason that many kids who take this supplement will be on the keto diet because of it's high fat content, and therefore that yes, finetuning got thrown off after adding it. In 's case I think his seizure increase was from a chain of events that adding the supplement caused, rather than a reaction to the product per se. He was already calorie deficient, (based on the first ree dx test) adding the carnitine excacerbated the problem, it sped up his metabolism, he ploughed thru cals quicker, leaving a big shortfall in between meals and he also lost some body fat - ketones rose, (bhbs higher than our hosp lab could even measure the night he was admitted ) and at the same time the med he was on (already borderline toxic) increased in 'strength' from the deeper ketosis level, to an extent where he went toxic on the whole combination. There is therefore probably no one answer as to how each kiddie reacts, and yeah, it is the trial and error thing, the important thing to remember is that like anything else we try on this diet, to try and not adjust other things while trialling it I guess. If we had our time all over again from day one of the diet, I actually think I would have started it with carnitine included from the outset, especially as was on depakote - no doubt that the diet/dep combo in his case has caused a problem with his carnitine levels, but the metabolism changes (dietician descibed his as an entire metabolic shift) he experienced after adding it each time made it a whole lot harder to work backwards, whereas had he been on it from day one, we would have known where he was at already metabolically with it included - if that makes sense... ----- Original Message ----- From: Bill Barber , If carnitine improves the digestion of fat, it would seem that calories might have to be adjusted downward significantly to get to the right level? It's a long process of trial and error, right? It might not be seizures occurring because of the use of carnitine, but rather the effect of the increased calories from the improved digestion of the fat in the diet. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 , I guess that is why it is not recommended to combine the diet with depakote. There are many reports of big problems with this combination. Sorry that you are one of them. Bill & Hill wrote: > Yes, that is what I think about the warning the carnitine supplement > carries - it can indeed cause a seizure increase - but Sigma Tau > themselves admit when asked, that they have never gone any further > down the track as to 'why'. Just that because there were cases > reported, especially in those who already had seizures, they were > legally obliged to include it in the product warning. Stands to > reason that many kids who take this supplement will be on the keto > diet because of it's high fat content, and therefore that yes, > finetuning got thrown off after adding it. In 's case I think > his seizure increase was from a chain of events that adding the > supplement caused, rather than a reaction to the product per se. He > was already calorie deficient, (based on the first ree dx test) > adding the carnitine excacerbated the problem, it sped up his > metabolism, he ploughed thru cals quicker, leaving a big shortfall in > between meals and he also lost some body fat - ketones rose, (bhbs > higher than our hosp lab could even measure the night he was admitted > ) and at the same time the med he was on (already borderline > toxic) increased in 'strength' from the deeper ketosis level, to an > extent where he went toxic on the whole combination. There is > therefore probably no one answer as to how each kiddie reacts, and > yeah, it is the trial and error thing, the important thing to > remember is that like anything else we try on this diet, to try and > not adjust other things while trialling it I guess. If we had our > time all over again from day one of the diet, I actually think I > would have started it with carnitine included from the outset, > especially as was on depakote - no doubt that the diet/dep > combo in his case has caused a problem with his carnitine levels, but > the metabolism changes (dietician descibed his as an entire metabolic > shift) he experienced after adding it each time made it a whole lot > harder to work backwards, whereas had he been on it from day one, we > would have known where he was at already metabolically with it > included - if that makes sense... > > > > > ----- Original Message ----- From: Bill Barber > > > , > > If carnitine improves the digestion of fat, it would seem that > calories might have to be adjusted downward significantly to get to > the right level? It's a long process of trial and error, right? > > It might not be seizures occurring because of the use of carnitine, > but rather the effect of the increased calories from the improved > digestion of the fat in the diet. > > Bill > > > > > > Quote Link to comment Share on other sites More sharing options...
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