Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Thanks for your encouraging posts, Bill and Nicola. I'm half afraid the 'improvements' are in my own imagination. Or maybe they are because we do just as you suggest, Nicola. We give Ethan a completely stress free day, it goes well, so the next day I say, " Hey Ethan, let's read a little Social Studies " and the cycle of seizures, sometimes lasting up to 45 minutes begins. We are fine tuning just by adding things like: CoEnzyme 10 (which I haven't ordered, yet), carnitore, and MCT oil (Which CVS can no longer get. He is already on a 4.5:1 ratio, so no changing there. I guess we'll just wait and see what happens. I'm not feeling too hopefull. It sort of brings back all the memories of 6 years of Epilepsy and 7 different medications and all the hopes and dashed hopes. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Gretchen, You seem to have a cycle going there and there should be an answer somewhere. My first reaction is always to look at calories. Even 25 or 50 calories a day can be critical. If you look at Dr. Freeman's book he describes several cases of this being so. It could be that the seizures themselves burn up the extra calories so that he is balanced in ketosis the next day. There are several suggestions in Dr. Freeman's book on this and other variables that can be tried to do fine-tuning. I would look at those before " adding things " . Even the constipation that seems to be prevalent on the diet was causing seizures for us. I don't know how long you have been on the diet, but it can be a year or more to get things the best they can be. Bill gretchen_kissock wrote: > Thanks for your encouraging posts, Bill and Nicola. I'm half afraid > the 'improvements' are in my own imagination. Or maybe they are > because we do just as you suggest, Nicola. We give Ethan a > completely stress free day, it goes well, so the next day I > say, " Hey Ethan, let's read a little Social Studies " and the cycle > of seizures, sometimes lasting up to 45 minutes begins. We are fine > tuning just by adding things like: CoEnzyme 10 (which I haven't > ordered, yet), carnitore, and MCT oil (Which CVS can no longer get. > He is already on a 4.5:1 ratio, so no changing there. I guess we'll > just wait and see what happens. I'm not feeling too hopefull. It > sort of brings back all the memories of 6 years of Epilepsy and 7 > different medications and all the hopes and dashed hopes. > Gretchen > > > > > " 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 May 19, 2004 Report Share Posted May 19, 2004 Gretchen, You seem to have a cycle going there and there should be an answer somewhere. My first reaction is always to look at calories. Even 25 or 50 calories a day can be critical. If you look at Dr. Freeman's book he describes several cases of this being so. It could be that the seizures themselves burn up the extra calories so that he is balanced in ketosis the next day. There are several suggestions in Dr. Freeman's book on this and other variables that can be tried to do fine-tuning. I would look at those before " adding things " . Even the constipation that seems to be prevalent on the diet was causing seizures for us. I don't know how long you have been on the diet, but it can be a year or more to get things the best they can be. Bill gretchen_kissock wrote: > Thanks for your encouraging posts, Bill and Nicola. I'm half afraid > the 'improvements' are in my own imagination. Or maybe they are > because we do just as you suggest, Nicola. We give Ethan a > completely stress free day, it goes well, so the next day I > say, " Hey Ethan, let's read a little Social Studies " and the cycle > of seizures, sometimes lasting up to 45 minutes begins. We are fine > tuning just by adding things like: CoEnzyme 10 (which I haven't > ordered, yet), carnitore, and MCT oil (Which CVS can no longer get. > He is already on a 4.5:1 ratio, so no changing there. I guess we'll > just wait and see what happens. I'm not feeling too hopefull. It > sort of brings back all the memories of 6 years of Epilepsy and 7 > different medications and all the hopes and dashed hopes. > Gretchen > > > > > " 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 May 19, 2004 Report Share Posted May 19, 2004 Gretchen, You seem to have a cycle going there and there should be an answer somewhere. My first reaction is always to look at calories. Even 25 or 50 calories a day can be critical. If you look at Dr. Freeman's book he describes several cases of this being so. It could be that the seizures themselves burn up the extra calories so that he is balanced in ketosis the next day. There are several suggestions in Dr. Freeman's book on this and other variables that can be tried to do fine-tuning. I would look at those before " adding things " . Even the constipation that seems to be prevalent on the diet was causing seizures for us. I don't know how long you have been on the diet, but it can be a year or more to get things the best they can be. Bill gretchen_kissock wrote: > Thanks for your encouraging posts, Bill and Nicola. I'm half afraid > the 'improvements' are in my own imagination. Or maybe they are > because we do just as you suggest, Nicola. We give Ethan a > completely stress free day, it goes well, so the next day I > say, " Hey Ethan, let's read a little Social Studies " and the cycle > of seizures, sometimes lasting up to 45 minutes begins. We are fine > tuning just by adding things like: CoEnzyme 10 (which I haven't > ordered, yet), carnitore, and MCT oil (Which CVS can no longer get. > He is already on a 4.5:1 ratio, so no changing there. I guess we'll > just wait and see what happens. I'm not feeling too hopefull. It > sort of brings back all the memories of 6 years of Epilepsy and 7 > different medications and all the hopes and dashed hopes. > Gretchen > > > > > " 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...
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