Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Has anyone had any experience on the diet with either alpha-lipolic acid or CoQ-10 as a supplement? If so, has there been any improvement shown after useing either of these? Our daughter has been on the keto diet for 4 1/2 months and shown some improvement. Like any good parent out there we are looking everywhere for something that works to stop these spasms. Jeff & , parents to , 18 months, diagnosed IS at 2 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi Jeff & I give ph alot of supplements including ALA(in omega 3-6 complex).As soon as I started to give ph fatty acids his Infant development worker and a speech pathologist noticed improvement in cognitive skills and his behaviour also improved.I am not sure about seizure control though. Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23 2004 > Has anyone had any experience on the diet with either alpha- lipolic > acid or CoQ-10 as a supplement? If so, has there been any > improvement shown after useing either of these? Our daughter has > been on the keto diet for 4 1/2 months and shown some improvement. > Like any good parent out there we are looking everywhere for > something that works to stop these spasms. > > Jeff & , parents to , 18 months, diagnosed IS at 2 > 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Hannah is 8 1/2 months old, has been on some version of the diet since birth, diagnosed IS at 2 months, has some kind of unknown metabolic/mitochondrial issue going on not yet dx, and takes 30mg CoQ10. It is supposed to provide energy and help in the digestion of fats. It has not stopped any spasms. We continue to hope and pray. vitamin supplements question Has anyone had any experience on the diet with either alpha-lipolic acid or CoQ-10 as a supplement? If so, has there been any improvement shown after useing either of these? Our daughter has been on the keto diet for 4 1/2 months and shown some improvement. Like any good parent out there we are looking everywhere for something that works to stop these spasms. Jeff & , parents to , 18 months, diagnosed IS at 2 1/2 months. " 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 September 28, 2004 Report Share Posted September 28, 2004 Thank you, if we have a good response we will let you know. > Hannah is 8 1/2 months old, has been on some version of the diet since birth, diagnosed IS at 2 months, has some kind of unknown metabolic/mitochondrial issue going on not yet dx, and takes 30mg CoQ10. It is supposed to provide energy and help in the digestion of fats. It has not stopped any spasms. We continue to hope and pray. > vitamin supplements question > > > Has anyone had any experience on the diet with either alpha- lipolic > acid or CoQ-10 as a supplement? If so, has there been any > improvement shown after useing either of these? Our daughter has > been on the keto diet for 4 1/2 months and shown some improvement. > Like any good parent out there we are looking everywhere for > something that works to stop these spasms. > > Jeff & , parents to , 18 months, diagnosed IS at 2 > 1/2 months. > > > > " 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 September 28, 2004 Report Share Posted September 28, 2004 Thanks, Natasha. We were thinking of starting omega 3 and were a little concerned about the sorbitol-d in it. Is the supplement you are giving ph carbo free? We will let you know if we get good results off the other supplements. Jeff & -- In ketogenic , " natashagainford " wrote: > Hi Jeff & > I give ph alot of supplements including ALA(in omega 3-6 > complex).As soon as I started to give ph fatty acids his Infant > development worker and a speech pathologist noticed improvement in > cognitive skills and his behaviour also improved.I am not sure about > seizure control though. > > Natasha,mom to 2 years old ph,suspected SMEI/Dravet's > syndrome,keto kid since August 23 2004 > > > > > Has anyone had any experience on the diet with either alpha- > lipolic > > acid or CoQ-10 as a supplement? If so, has there been any > > improvement shown after useing either of these? Our daughter has > > been on the keto diet for 4 1/2 months and shown some > improvement. > > Like any good parent out there we are looking everywhere for > > something that works to stop these spasms. > > > > Jeff & , parents to , 18 months, diagnosed IS at > 2 > > 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Yes I give ph carb-free supplement.I buy capsules for adults(not for kids that usually are sweetened with something).I just make a hole with knife in a capsule and squeeze oil out of it,then I surringe it and ph takes it with no problem Natasha > > > Has anyone had any experience on the diet with either alpha- > > lipolic > > > acid or CoQ-10 as a supplement? If so, has there been any > > > improvement shown after useing either of these? Our daughter > has > > > been on the keto diet for 4 1/2 months and shown some > > improvement. > > > Like any good parent out there we are looking everywhere for > > > something that works to stop these spasms. > > > > > > Jeff & , parents to , 18 months, diagnosed IS > at > > 2 > > > 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 We were curious what kind of dose you give ph, what his weight is? No one seems to know (doctors) what should be given. Thanks. Jeff & > > > > Has anyone had any experience on the diet with either alpha- > > > lipolic > > > > acid or CoQ-10 as a supplement? If so, has there been any > > > > improvement shown after useing either of these? Our daughter > > has > > > > been on the keto diet for 4 1/2 months and shown some > > > improvement. > > > > Like any good parent out there we are looking everywhere for > > > > something that works to stop these spasms. > > > > > > > > Jeff & , parents to , 18 months, diagnosed IS > > at > > > 2 > > > > 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Hi Jeff & Yes,doctors seem to know very little about fatty acids supplements.Our dietitian said there are now established doses for children.Well on the bottle I give ph there is instruction to geive 1-2 capsules 3 times a day ( for adults).So I figured 2 capsules a day would be just fine for ph.He is 13 kilos ( 2 years old) and each capsule contains 400 mg of fixh oil,400 mg og flax oil,400 mg of borage oil.I had been giving this aamount for quite a few months before the diet.When we started the diet out diatitian said it was a bit too much as they do not really know exact ammount of oils for kids and that these oils can " thin " blood.We checked ph's blood and it was perfectly normal.Anyways she suggested to continue supplements but cut the dose to 1 capsule a day.So now I give ph just 1 capsule and I also add flax oil o his meals Hope it helps Natasha > > > > > Has anyone had any experience on the diet with either alpha- > > > > lipolic > > > > > acid or CoQ-10 as a supplement? If so, has there been any > > > > > improvement shown after useing either of these? Our > daughter > > > has > > > > > been on the keto diet for 4 1/2 months and shown some > > > > improvement. > > > > > Like any good parent out there we are looking everywhere for > > > > > something that works to stop these spasms. > > > > > > > > > > Jeff & , parents to , 18 months, diagnosed > IS > > > at > > > > 2 > > > > > 1/2 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Natasha, Thank you so much for the quick reply. We will give it a try. Jeff & > > > > > > Has anyone had any experience on the diet with either > alpha- > > > > > lipolic > > > > > > acid or CoQ-10 as a supplement? If so, has there been any > > > > > > improvement shown after useing either of these? Our > > daughter > > > > has > > > > > > been on the keto diet for 4 1/2 months and shown some > > > > > improvement. > > > > > > Like any good parent out there we are looking everywhere > for > > > > > > something that works to stop these spasms. > > > > > > > > > > > > Jeff & , parents to , 18 months, > diagnosed > > IS > > > > at > > > > > 2 > > > > > > 1/2 months. Quote Link to comment Share on other sites More sharing options...
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