Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 lin has been on the ketogenic diet now for 3 weeks. We started on the Atkins diet and did that for about a month before easing into the ketogenic diet. We have a dietician to advise us but never did the hospital stay. lin is on 1142 calories a day which is 80% of his caloric needs (our dietician wanted to give him more but I argued to keep that at 80% since lin is at approx. 60% on the weight chart). We have lin on a 4:1 ratio and I'm using the mealplanner to figure his meals. lin is now having 8 - 12 drop seizures a day. His ketone level is at 40 in the mornings and 80 in the afternoons. Have tried giving him a snack in the evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the snack has made no difference to his ketone level. How can we get his ketones higher? I know many here have the opposite problem but we just can't seem to get his ketones up high enough. I keep feeling like if we could get them up to a consistent 80 that he might not have so many seizures. lin is not on any drugs. We weaned the topomax while he was on the Atkins diet. Tomorrow it will be 1 year since lin had his first tonic-clonic seizure. How different our lives are now! Thanks! Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 I had this problem with Mike too. Reducing meds is what worked for us altho I still cant get his ketones at 80 consistently in the am. He still isnt peeing regularly so I am still having problems checking ketones as well. Jenn Kathy Greenwood wrote: lin has been on the ketogenic diet now for 3 weeks. We started on the Atkins diet and did that for about a month before easing into the ketogenic diet. We have a dietician to advise us but never did the hospital stay. lin is on 1142 calories a day which is 80% of his caloric needs (our dietician wanted to give him more but I argued to keep that at 80% since lin is at approx. 60% on the weight chart). We have lin on a 4:1 ratio and I'm using the mealplanner to figure his meals. lin is now having 8 - 12 drop seizures a day. His ketone level is at 40 in the mornings and 80 in the afternoons. Have tried giving him a snack in the evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the snack has made no difference to his ketone level. How can we get his ketones higher? I know many here have the opposite problem but we just can't seem to get his ketones up high enough. I keep feeling like if we could get them up to a consistent 80 that he might not have so many seizures. lin is not on any drugs. We weaned the topomax while he was on the Atkins diet. Tomorrow it will be 1 year since lin had his first tonic-clonic seizure. How different our lives are now! Thanks! Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) "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 January 1, 2002 Report Share Posted January 1, 2002 The addition of MCT oil is what made the difference for us. We were dropping down to +1.5 every day then we added in the MCT oil and now we drop to +4 every day but we have siezure control. It just bumped the ketones up that little bit but it made the difference. Gillian's on 600 cals, 4 meals, 6grams MCT per meal and 3grams of a blended oil and the rest of her fat in the form of butter, cheese or mayo. Once her ketones come up it takes a couple of days before the siezures stop. Anyways thats whats working for us. Take care. Liz4Gillian -- In ketogenic@y..., Kathy Greenwood <malinois@m...> wrote: > lin has been on the ketogenic diet now for 3 weeks. We started on the > Atkins diet and did that for about a month before easing into the ketogenic > diet. We have a dietician to advise us but never did the hospital stay. > lin is on 1142 calories a day which is 80% of his caloric needs (our > dietician wanted to give him more but I argued to keep that at 80% since > lin is at approx. 60% on the weight chart). We have lin on a 4:1 > ratio and I'm using the mealplanner to figure his meals. lin is now > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > mornings and 80 in the afternoons. Have tried giving him a snack in the > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the snack > has made no difference to his ketone level. How can we get his ketones > higher? I know many here have the opposite problem but we just can't seem > to get his ketones up high enough. I keep feeling like if we could get them > up to a consistent 80 that he might not have so many seizures. lin is > not on any drugs. We weaned the topomax while he was on the Atkins diet. > Tomorrow it will be 1 year since lin had his first tonic-clonic > seizure. How different our lives are now! > > Thanks! > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Where do you get the MCT oil? At a health food store? Any particular brand? Thanks! Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) Re: ketone level > The addition of MCT oil is what made the difference for us. We were > dropping down to +1.5 every day then we added in the MCT oil and now > we drop to +4 every day but we have siezure control. It just bumped > the ketones up that little bit but it made the difference. Gillian's > on 600 cals, 4 meals, 6grams MCT per meal and 3grams of a blended oil > and the rest of her fat in the form of butter, cheese or mayo. Once > her ketones come up it takes a couple of days before the siezures > stop. Anyways thats whats working for us. Take care. > Liz4Gillian > > -- In ketogenic@y..., Kathy Greenwood <malinois@m...> wrote: > > lin has been on the ketogenic diet now for 3 weeks. We > started on the > > Atkins diet and did that for about a month before easing into the > ketogenic > > diet. We have a dietician to advise us but never did the hospital > stay. > > lin is on 1142 calories a day which is 80% of his caloric > needs (our > > dietician wanted to give him more but I argued to keep that at 80% > since > > lin is at approx. 60% on the weight chart). We have lin > on a 4:1 > > ratio and I'm using the mealplanner to figure his meals. lin > is now > > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > > mornings and 80 in the afternoons. Have tried giving him a snack > in the > > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and > the snack > > has made no difference to his ketone level. How can we get his > ketones > > higher? I know many here have the opposite problem but we just > can't seem > > to get his ketones up high enough. I keep feeling like if we could > get them > > up to a consistent 80 that he might not have so many seizures. > lin is > > not on any drugs. We weaned the topomax while he was on the Atkins > diet. > > Tomorrow it will be 1 year since lin had his first tonic-clonic > > seizure. How different our lives are now! > > > > Thanks! > > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic > epilepsy) > > > " 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 January 2, 2002 Report Share Posted January 2, 2002 I get my MCT oil at the pharmacy - here I can get a prescrip for it from the doctor. Dont know if that works for everyone tho. Jenn Kathy Greenwood wrote: Where do you get the MCT oil? At a health food store? Any particular brand? Thanks! Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) Re: ketone level > The addition of MCT oil is what made the difference for us. We were > dropping down to +1.5 every day then we added in the MCT oil and now > we drop to +4 every day but we have siezure control. It just bumped > the ketones up that little bit but it made the difference. Gillian's > on 600 cals, 4 meals, 6grams MCT per meal and 3grams of a blended oil > and the rest of her fat in the form of butter, cheese or mayo. Once > her ketones come up it takes a couple of days before the siezures > stop. Anyways thats whats working for us. Take care. > Liz4Gillian > > -- In ketogenic@y..., Kathy Greenwood <malinois@m...> wrote: > > lin has been on the ketogenic diet now for 3 weeks. We > started on the > > Atkins diet and did that for about a month before easing into the > ketogenic > > diet. We have a dietician to advise us but never did the hospital > stay. > > lin is on 1142 calories a day which is 80% of his caloric > needs (our > > dietician wanted to give him more but I argued to keep that at 80% > since > > lin is at approx. 60% on the weight chart). We have lin > on a 4:1 > > ratio and I'm using the mealplanner to figure his meals. lin > is now > > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > > mornings and 80 in the afternoons. Have tried giving him a snack > in the > > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and > the snack > > has made no difference to his ketone level. How can we get his > ketones > > higher? I know many here have the opposite problem but we just > can't seem > > to get his ketones up high enough. I keep feeling like if we could > get them > > up to a consistent 80 that he might not have so many seizures. > lin is > > not on any drugs. We weaned the topomax while he was on the Atkins > diet. > > Tomorrow it will be 1 year since lin had his first tonic-clonic > > seizure. How different our lives are now! > > > > Thanks! > > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic > epilepsy) > > > "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 January 8, 2002 Report Share Posted January 8, 2002 Kathy, We have been on the diet for 14 months. I meant " we " . Hopefully, we will be at the right weight and calorie level shortly. This has taken several months. Next we will be looking at increasing ketone levels. I believe that there are 2 choices; increase the ratio or use MCT oil. We may have to try both. Most improvements to the diet have seemed to be of the trial and error type. Bill ketone level > lin has been on the ketogenic diet now for 3 weeks. We started on the > Atkins diet and did that for about a month before easing into the ketogenic > diet. We have a dietician to advise us but never did the hospital stay. > lin is on 1142 calories a day which is 80% of his caloric needs (our > dietician wanted to give him more but I argued to keep that at 80% since > lin is at approx. 60% on the weight chart). We have lin on a 4:1 > ratio and I'm using the mealplanner to figure his meals. lin is now > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > mornings and 80 in the afternoons. Have tried giving him a snack in the > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the snack > has made no difference to his ketone level. How can we get his ketones > higher? I know many here have the opposite problem but we just can't seem > to get his ketones up high enough. I keep feeling like if we could get them > up to a consistent 80 that he might not have so many seizures. lin is > not on any drugs. We weaned the topomax while he was on the Atkins diet. > Tomorrow it will be 1 year since lin had his first tonic-clonic > seizure. How different our lives are now! > > Thanks! > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) > Quote Link to comment Share on other sites More sharing options...
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