Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Different labs have different ways of measuring and you have to do the conversions. I had it figured out once a year or two ago cuz Jess measured 25 with good seizure control and then later 33 when we had no seizrue control. If I remember correctly you move the decision at least three places to the left, maybe four places, can't remember.. Meaning 25 would be 0.25 and 33 would be 0.33, as in less than 1 and in Jess' case actually less than what would be expected of a person not in ketosis. Showing that bhb means something for some kids and not for others. heididoe@... wrote: > I'm confused by the BHB levels you listed - I guess I thought the > levels were supposed to be in the single digits? According to the > Keto book, they say BHB levels should be between 4 and 6 for good > seizure control. Lucas' BHB has been 1.6 and 3.2 the 2 times we've > had it measured - both times the blood was drawn at trace urinary > amounts. I'm not sure how Connor would have BHB levels between 43 & > 69? Anybody else have any thoughts? > > Heidi > > >>Connor's betahydroxybutyrate level has gone from 69 when he was > seizure free down to 43 at the start of the seizures and was 54 at > the end of the fast. His urine keytones are 80-160 in the morn, 40-80 > in the afternoon and 80-160 at night. > > " 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 July 11, 2001 Report Share Posted July 11, 2001 Different labs have different ways of measuring and you have to do the conversions. I had it figured out once a year or two ago cuz Jess measured 25 with good seizure control and then later 33 when we had no seizrue control. If I remember correctly you move the decision at least three places to the left, maybe four places, can't remember.. Meaning 25 would be 0.25 and 33 would be 0.33, as in less than 1 and in Jess' case actually less than what would be expected of a person not in ketosis. Showing that bhb means something for some kids and not for others. heididoe@... wrote: > I'm confused by the BHB levels you listed - I guess I thought the > levels were supposed to be in the single digits? According to the > Keto book, they say BHB levels should be between 4 and 6 for good > seizure control. Lucas' BHB has been 1.6 and 3.2 the 2 times we've > had it measured - both times the blood was drawn at trace urinary > amounts. I'm not sure how Connor would have BHB levels between 43 & > 69? Anybody else have any thoughts? > > Heidi > > >>Connor's betahydroxybutyrate level has gone from 69 when he was > seizure free down to 43 at the start of the seizures and was 54 at > the end of the fast. His urine keytones are 80-160 in the morn, 40-80 > in the afternoon and 80-160 at night. > > " 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 July 11, 2001 Report Share Posted July 11, 2001 Becky, Decreasing the calories may be a good thing. I'm wondering if that is why his ketones are lower in the middle of the day. How do his ketones correlate with the seizures? Does he have the seizures when his ketones are lower? higher? Seems every kids has their favorite spot on the ketone strip. Where did his ketones stay when he had the seizure free months? It takes several weeks (some say months) for the Depakote to get out of his system. Wondering if this could be withdrawal seizures. Yes, I would definitly add flax, this may stablize his ketones. I'd be careful though, with the 4.5:1 ratio, watch for signs of being too ketotic or acidic. Another thought is this: I'm sure not one to push the drugs, but if you can get back to the " seizure free " months by adding back a little Depakote, I'd consider it. I know we all have the goal of medicine free, but some kids need the medicine. Don't feel defeated if you decide to add it back. The main " free " we all want is " seizure free. " Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 On Tue, 10 Jul 2001 09:59:09 +0800 " Cam " writes: > I sent a posting a couple of weeks ago about my son Connor. I only > heard back from one person so I'm sending it out again because we > need HELP! Connor has been on the diet since 10/00 and seizure free > the whole time up until 1 month ago. Now he is having about 10 small > myoclonic jerks a day. We finished weanning Depakote about 1 month > before the seizures started up. Connor was still on phenobarb. We > have ruled out any mistakes, taken away the sugar free pop, The Dr. > upped the phenobarb because it wasn't at a theraputic level, changed > the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two > weeks ago. None of this has helped. Connor's betahydroxybutyrate > level has gone from 69 when he was seizure free down to 43 at the > start of the seizures and was 54 at the end of the fast. His urine > keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 > at night. The next plan is to try lowering his calories and see if > that helps. I also am going to add some flax oil and increase the > MCT by a couple of grams. I also wonder if too much processed meat > can lower keytones? Any suggestions will be great. > Becky > > > -- > > > > " 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 July 11, 2001 Report Share Posted July 11, 2001 Becky, Decreasing the calories may be a good thing. I'm wondering if that is why his ketones are lower in the middle of the day. How do his ketones correlate with the seizures? Does he have the seizures when his ketones are lower? higher? Seems every kids has their favorite spot on the ketone strip. Where did his ketones stay when he had the seizure free months? It takes several weeks (some say months) for the Depakote to get out of his system. Wondering if this could be withdrawal seizures. Yes, I would definitly add flax, this may stablize his ketones. I'd be careful though, with the 4.5:1 ratio, watch for signs of being too ketotic or acidic. Another thought is this: I'm sure not one to push the drugs, but if you can get back to the " seizure free " months by adding back a little Depakote, I'd consider it. I know we all have the goal of medicine free, but some kids need the medicine. Don't feel defeated if you decide to add it back. The main " free " we all want is " seizure free. " Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 On Tue, 10 Jul 2001 09:59:09 +0800 " Cam " writes: > I sent a posting a couple of weeks ago about my son Connor. I only > heard back from one person so I'm sending it out again because we > need HELP! Connor has been on the diet since 10/00 and seizure free > the whole time up until 1 month ago. Now he is having about 10 small > myoclonic jerks a day. We finished weanning Depakote about 1 month > before the seizures started up. Connor was still on phenobarb. We > have ruled out any mistakes, taken away the sugar free pop, The Dr. > upped the phenobarb because it wasn't at a theraputic level, changed > the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two > weeks ago. None of this has helped. Connor's betahydroxybutyrate > level has gone from 69 when he was seizure free down to 43 at the > start of the seizures and was 54 at the end of the fast. His urine > keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 > at night. The next plan is to try lowering his calories and see if > that helps. I also am going to add some flax oil and increase the > MCT by a couple of grams. I also wonder if too much processed meat > can lower keytones? Any suggestions will be great. > Becky > > > -- > > > > " 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 July 11, 2001 Report Share Posted July 11, 2001 Becky, Decreasing the calories may be a good thing. I'm wondering if that is why his ketones are lower in the middle of the day. How do his ketones correlate with the seizures? Does he have the seizures when his ketones are lower? higher? Seems every kids has their favorite spot on the ketone strip. Where did his ketones stay when he had the seizure free months? It takes several weeks (some say months) for the Depakote to get out of his system. Wondering if this could be withdrawal seizures. Yes, I would definitly add flax, this may stablize his ketones. I'd be careful though, with the 4.5:1 ratio, watch for signs of being too ketotic or acidic. Another thought is this: I'm sure not one to push the drugs, but if you can get back to the " seizure free " months by adding back a little Depakote, I'd consider it. I know we all have the goal of medicine free, but some kids need the medicine. Don't feel defeated if you decide to add it back. The main " free " we all want is " seizure free. " Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 On Tue, 10 Jul 2001 09:59:09 +0800 " Cam " writes: > I sent a posting a couple of weeks ago about my son Connor. I only > heard back from one person so I'm sending it out again because we > need HELP! Connor has been on the diet since 10/00 and seizure free > the whole time up until 1 month ago. Now he is having about 10 small > myoclonic jerks a day. We finished weanning Depakote about 1 month > before the seizures started up. Connor was still on phenobarb. We > have ruled out any mistakes, taken away the sugar free pop, The Dr. > upped the phenobarb because it wasn't at a theraputic level, changed > the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two > weeks ago. None of this has helped. Connor's betahydroxybutyrate > level has gone from 69 when he was seizure free down to 43 at the > start of the seizures and was 54 at the end of the fast. His urine > keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 > at night. The next plan is to try lowering his calories and see if > that helps. I also am going to add some flax oil and increase the > MCT by a couple of grams. I also wonder if too much processed meat > can lower keytones? Any suggestions will be great. > Becky > > > -- > > > > " 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 July 11, 2001 Report Share Posted July 11, 2001 Terry, I think that I understand now. I would be concerned that you can get accurate measurements using your method. i.e. 10 % is a lot when we are measuring to the nearest gram. However, if you are consistant then perhaps it doesn't matter. I also wonder about fat floating to the top. With a blender it might be thoroughly mixed, but that would stay in my thoughts as a possible source of error. You can probably tell from looking at it. Maybe if it is not mixing evenly, you are getting one meal with one ratio and the second meal has a different ratio. Can you add the oil later as it has a huge influence on calories or will that not permit the blender to operate? We use a food processor and that is easier to scrape out. It has a smaller bowl that fits inside the normal bowl and that allows small quantities to be processed. You might try to give less fluid at one time as it is suggested in Freeman's book that too much at one time can " dilute " the ketones and give seizures. One thing this diet demands is patience. I find that it often takes 2 weeks to get an idea of the effect of med changes, ratio and calorie changes, etc. I am seeing seizures at certain times of the day and I used to think that it had something to do with the meds. But since we are med free I am wondering if it is too much fluid at one time or that we should look at changing meals. By weighing accuratele each week at the same time I am getting a better handle on calories and I am now adjusting by 25 calories a day to get it right! Bill Terry Krumrei wrote: > > Bill, > Nick gets 4 meals a day. I make them 2 identical meals at a time, though > they could be a mix of 2 different meals. My 2 figures was an example of > how I blend his food. He is getting 39 g total in this meal. So to blend 2 > meals together I double the grams and add 10%. The one figure is the amount > he actually gets, the other amount is doubled plus 10%. The extra 10% is to > compensate for what is left in the blender that is tough to scrap out. > Sorry for the confusion, but my head is a little too full right now. I got > my BHB back from 11 days ago and it was plenty high at 3:1 after our 100 > calorie drop. It was 6.12. Since then we have changed the ratio to 3.5:1 > and he is responding poorly. My neurologist looked at our level and said > he'd like it at 6.4 so i should skip a meal. NO WAY! I reminded him that > the level was 11 days old and was on his old ratio. It takes us too long to > get results back when you live in the boonies. I would assume Nick's > ketones are too high. My neuro wants me to add meds, 100mg of Felbatol am > and pm. > I feel we were getting some control at 3.25:1 and now we are not. Is it not > reasonable to drop down the ratio, or do I need to wait another 11 days for > test results? > We got blood work done today to check protein-to see if I can give him less > protein, liver check, and glucose. I should find out tomorrow. > Still trying to be patient > Dianna > > The Barbers wrote: > > > Hi Terry, > > > > I don't understand your ex. What are the 2 figures? > > > > If you are changing the ratio, you might also want to check the calories. > > We > > found that after stopping the meds, the activity levels were totally > > different > > and had to reassess the calory level. It takes a long time to do. We had > > increased seizure activity for several weeks after discontinuing tegretol > > and > > I think that we may still be seeing some after-affects. > > > > Bill > > > > Terry Krumrei wrote: > > > > > > , > > > gets 2 equal meals twice a day. I put them in the blender, add > > 10% > > > to compensate for what I can't get scraped out. Then I weigh the > > mixture to > > > total the number of grams per each meal. I put the other meal in the > > fridge > > > for later. > > > for ex. > > > chicken breast 13g 28.6g > > > carrots-cooked 7g 15.4g > > > daily sup 1 > > > daily enzyme 1 > > > olive oil 19g 41.8 > > > RCF 9g > > > > > > I then weigh 39 g and add his daily nutrients. His RCF he drinks with > > > stevia out of a nose cup. I try and give him 100 -150 ml's of water at > > meal > > > time. We try and give him 100-150 ml's 3 other times a day at least 1-2 > > > > > hours apart.Do you think that we would be getting worse seizures 3-4 > > weeks > > > after weaning a drug? We had no visible effects after the klonopin wean > > , > > > but are seeing things now. > > > My neuro told me to increase meds, but we experienced some positive > > results > > > at the 3:1 and now that we are upping the ratio the seizures are > > upping. I > > > said I want to use diastat and fine tune, not add meds. > > > I called my Dietitain and she doesn't want to make any changes at this > > > time. She is going to talk to the neuro about it tomorrow. > > > I also got a gluclose blood monitor tonite on e-bay, so I can check how > > it > > > is when seizures are acting up. > > > > > > Dianna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Terry, I think that I understand now. I would be concerned that you can get accurate measurements using your method. i.e. 10 % is a lot when we are measuring to the nearest gram. However, if you are consistant then perhaps it doesn't matter. I also wonder about fat floating to the top. With a blender it might be thoroughly mixed, but that would stay in my thoughts as a possible source of error. You can probably tell from looking at it. Maybe if it is not mixing evenly, you are getting one meal with one ratio and the second meal has a different ratio. Can you add the oil later as it has a huge influence on calories or will that not permit the blender to operate? We use a food processor and that is easier to scrape out. It has a smaller bowl that fits inside the normal bowl and that allows small quantities to be processed. You might try to give less fluid at one time as it is suggested in Freeman's book that too much at one time can " dilute " the ketones and give seizures. One thing this diet demands is patience. I find that it often takes 2 weeks to get an idea of the effect of med changes, ratio and calorie changes, etc. I am seeing seizures at certain times of the day and I used to think that it had something to do with the meds. But since we are med free I am wondering if it is too much fluid at one time or that we should look at changing meals. By weighing accuratele each week at the same time I am getting a better handle on calories and I am now adjusting by 25 calories a day to get it right! Bill Terry Krumrei wrote: > > Bill, > Nick gets 4 meals a day. I make them 2 identical meals at a time, though > they could be a mix of 2 different meals. My 2 figures was an example of > how I blend his food. He is getting 39 g total in this meal. So to blend 2 > meals together I double the grams and add 10%. The one figure is the amount > he actually gets, the other amount is doubled plus 10%. The extra 10% is to > compensate for what is left in the blender that is tough to scrap out. > Sorry for the confusion, but my head is a little too full right now. I got > my BHB back from 11 days ago and it was plenty high at 3:1 after our 100 > calorie drop. It was 6.12. Since then we have changed the ratio to 3.5:1 > and he is responding poorly. My neurologist looked at our level and said > he'd like it at 6.4 so i should skip a meal. NO WAY! I reminded him that > the level was 11 days old and was on his old ratio. It takes us too long to > get results back when you live in the boonies. I would assume Nick's > ketones are too high. My neuro wants me to add meds, 100mg of Felbatol am > and pm. > I feel we were getting some control at 3.25:1 and now we are not. Is it not > reasonable to drop down the ratio, or do I need to wait another 11 days for > test results? > We got blood work done today to check protein-to see if I can give him less > protein, liver check, and glucose. I should find out tomorrow. > Still trying to be patient > Dianna > > The Barbers wrote: > > > Hi Terry, > > > > I don't understand your ex. What are the 2 figures? > > > > If you are changing the ratio, you might also want to check the calories. > > We > > found that after stopping the meds, the activity levels were totally > > different > > and had to reassess the calory level. It takes a long time to do. We had > > increased seizure activity for several weeks after discontinuing tegretol > > and > > I think that we may still be seeing some after-affects. > > > > Bill > > > > Terry Krumrei wrote: > > > > > > , > > > gets 2 equal meals twice a day. I put them in the blender, add > > 10% > > > to compensate for what I can't get scraped out. Then I weigh the > > mixture to > > > total the number of grams per each meal. I put the other meal in the > > fridge > > > for later. > > > for ex. > > > chicken breast 13g 28.6g > > > carrots-cooked 7g 15.4g > > > daily sup 1 > > > daily enzyme 1 > > > olive oil 19g 41.8 > > > RCF 9g > > > > > > I then weigh 39 g and add his daily nutrients. His RCF he drinks with > > > stevia out of a nose cup. I try and give him 100 -150 ml's of water at > > meal > > > time. We try and give him 100-150 ml's 3 other times a day at least 1-2 > > > > > hours apart.Do you think that we would be getting worse seizures 3-4 > > weeks > > > after weaning a drug? We had no visible effects after the klonopin wean > > , > > > but are seeing things now. > > > My neuro told me to increase meds, but we experienced some positive > > results > > > at the 3:1 and now that we are upping the ratio the seizures are > > upping. I > > > said I want to use diastat and fine tune, not add meds. > > > I called my Dietitain and she doesn't want to make any changes at this > > > time. She is going to talk to the neuro about it tomorrow. > > > I also got a gluclose blood monitor tonite on e-bay, so I can check how > > it > > > is when seizures are acting up. > > > > > > Dianna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Terry, I think that I understand now. I would be concerned that you can get accurate measurements using your method. i.e. 10 % is a lot when we are measuring to the nearest gram. However, if you are consistant then perhaps it doesn't matter. I also wonder about fat floating to the top. With a blender it might be thoroughly mixed, but that would stay in my thoughts as a possible source of error. You can probably tell from looking at it. Maybe if it is not mixing evenly, you are getting one meal with one ratio and the second meal has a different ratio. Can you add the oil later as it has a huge influence on calories or will that not permit the blender to operate? We use a food processor and that is easier to scrape out. It has a smaller bowl that fits inside the normal bowl and that allows small quantities to be processed. You might try to give less fluid at one time as it is suggested in Freeman's book that too much at one time can " dilute " the ketones and give seizures. One thing this diet demands is patience. I find that it often takes 2 weeks to get an idea of the effect of med changes, ratio and calorie changes, etc. I am seeing seizures at certain times of the day and I used to think that it had something to do with the meds. But since we are med free I am wondering if it is too much fluid at one time or that we should look at changing meals. By weighing accuratele each week at the same time I am getting a better handle on calories and I am now adjusting by 25 calories a day to get it right! Bill Terry Krumrei wrote: > > Bill, > Nick gets 4 meals a day. I make them 2 identical meals at a time, though > they could be a mix of 2 different meals. My 2 figures was an example of > how I blend his food. He is getting 39 g total in this meal. So to blend 2 > meals together I double the grams and add 10%. The one figure is the amount > he actually gets, the other amount is doubled plus 10%. The extra 10% is to > compensate for what is left in the blender that is tough to scrap out. > Sorry for the confusion, but my head is a little too full right now. I got > my BHB back from 11 days ago and it was plenty high at 3:1 after our 100 > calorie drop. It was 6.12. Since then we have changed the ratio to 3.5:1 > and he is responding poorly. My neurologist looked at our level and said > he'd like it at 6.4 so i should skip a meal. NO WAY! I reminded him that > the level was 11 days old and was on his old ratio. It takes us too long to > get results back when you live in the boonies. I would assume Nick's > ketones are too high. My neuro wants me to add meds, 100mg of Felbatol am > and pm. > I feel we were getting some control at 3.25:1 and now we are not. Is it not > reasonable to drop down the ratio, or do I need to wait another 11 days for > test results? > We got blood work done today to check protein-to see if I can give him less > protein, liver check, and glucose. I should find out tomorrow. > Still trying to be patient > Dianna > > The Barbers wrote: > > > Hi Terry, > > > > I don't understand your ex. What are the 2 figures? > > > > If you are changing the ratio, you might also want to check the calories. > > We > > found that after stopping the meds, the activity levels were totally > > different > > and had to reassess the calory level. It takes a long time to do. We had > > increased seizure activity for several weeks after discontinuing tegretol > > and > > I think that we may still be seeing some after-affects. > > > > Bill > > > > Terry Krumrei wrote: > > > > > > , > > > gets 2 equal meals twice a day. I put them in the blender, add > > 10% > > > to compensate for what I can't get scraped out. Then I weigh the > > mixture to > > > total the number of grams per each meal. I put the other meal in the > > fridge > > > for later. > > > for ex. > > > chicken breast 13g 28.6g > > > carrots-cooked 7g 15.4g > > > daily sup 1 > > > daily enzyme 1 > > > olive oil 19g 41.8 > > > RCF 9g > > > > > > I then weigh 39 g and add his daily nutrients. His RCF he drinks with > > > stevia out of a nose cup. I try and give him 100 -150 ml's of water at > > meal > > > time. We try and give him 100-150 ml's 3 other times a day at least 1-2 > > > > > hours apart.Do you think that we would be getting worse seizures 3-4 > > weeks > > > after weaning a drug? We had no visible effects after the klonopin wean > > , > > > but are seeing things now. > > > My neuro told me to increase meds, but we experienced some positive > > results > > > at the 3:1 and now that we are upping the ratio the seizures are > > upping. I > > > said I want to use diastat and fine tune, not add meds. > > > I called my Dietitain and she doesn't want to make any changes at this > > > time. She is going to talk to the neuro about it tomorrow. > > > I also got a gluclose blood monitor tonite on e-bay, so I can check how > > it > > > is when seizures are acting up. > > > > > > Dianna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Gee, only two meals per day - would seem unlikely that could work too well for keeping up ketones Terry Krumrei wrote: , gets 2 equal meals twice a day. I put them in the blender, add 10% to compensate for what I can't get scraped out. Then I weigh the mixture to total the number of grams per each meal. I put the other meal in the fridge for later. for ex. chicken breast 13g 28.6g carrots-cooked 7g 15.4g daily sup 1 daily enzyme 1 olive oil 19g 41.8 RCF 9g I then weigh 39 g and add his daily nutrients. His RCF he drinks with stevia out of a nose cup. I try and give him 100 -150 ml's of water at meal time. We try and give him 100-150 ml's 3 other times a day at least 1-2 hours apart.Do you think that we would be getting worse seizures 3-4 weeks after weaning a drug? We had no visible effects after the klonopin wean , but are seeing things now. My neuro told me to increase meds, but we experienced some positive results at the 3:1 and now that we are upping the ratio the seizures are upping. I said I want to use diastat and fine tune, not add meds. I called my Dietitain and she doesn't want to make any changes at this time. She is going to talk to the neuro about it tomorrow. I also got a gluclose blood monitor tonite on e-bay, so I can check how it is when seizures are acting up. Dianna Ciolli wrote: Hi, 1) Did you know that you can expect seizures from the wean for up to 3 months (and some say 6 months) after weaning meds? 2) Are you spacing out his fluids? 3) What does he get for breakfast (ketones are delayed)? We use processed meats and it doesn't lower Chases ketones at all. mom to Chase, 8 1/2 yrs old, ketokid since 3/00 med-free and still having seizures __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 Well, Bill, I just need to tell you that our very successful Keto Clinic in Portland, Oregon, that has put gotten hundreds of children through the diet successfully will not put a child on a ratio higher than 4.0:1, because they state emphatically that the ratio is too high, period, no further discussion. I'm quite sure knowing these people as I do, that this emphatic of a statement means they've been there and done that and have had really bad results for every child who they've tried this ratio with. And that is the reason why I'm unfraid to tell any parent that a child that is on a 4.5:1 ratio is on a ratio that is too high. So I am willing to say that that ratio is too high. mom to Chase, 8 1/2 yrs old, ketokid since 3/00, med-free since 3/01 but still having seizures __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 , He gets 4 meals a day-2 equal meals twice day-2x2=4 :-}. My husband always says I am hard to understand. Nick doesn't like to eat so he would probably prefer only 2. He was better yesterday. Still not where he was at 3:1, but improving daily. I was recently offered a case of sesame oil. Do you know if that is healthy or not? Dianna m.coole@... wrote: Gee, only two meals per day - would seem unlikely that could work too well for keeping up ketones Terry Krumrei wrote: , gets 2 equal meals twice a day. I put them in the blender, add 10% to compensate for what I can't get scraped out. Then I weigh the mixture to total the number of grams per each meal. I put the other meal in the fridge for later. for ex. chicken breast 13g 28.6g carrots-cooked 7g 15.4g daily sup 1 daily enzyme 1 olive oil 19g 41.8 RCF 9g I then weigh 39 g and add his daily nutrients. His RCF he drinks with stevia out of a nose cup. I try and give him 100 -150 ml's of water at meal time. We try and give him 100-150 ml's 3 other times a day at least 1-2 hours apart.Do you think that we would be getting worse seizures 3-4 weeks after weaning a drug? We had no visible effects after the klonopin wean , but are seeing things now. My neuro told me to increase meds, but we experienced some positive results at the 3:1 and now that we are upping the ratio the seizures are upping. I said I want to use diastat and fine tune, not add meds. I called my Dietitain and she doesn't want to make any changes at this time. She is going to talk to the neuro about it tomorrow. I also got a gluclose blood monitor tonite on e-bay, so I can check how it is when seizures are acting up. Dianna Ciolli wrote: Hi, 1) Did you know that you can expect seizures from the wean for up to 3 months (and some say 6 months) after weaning meds? 2) Are you spacing out his fluids? 3) What does he get for breakfast (ketones are delayed)? We use processed meats and it doesn't lower Chases ketones at all. mom to Chase, 8 1/2 yrs old, ketokid since 3/00 med-free and still having seizures __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 , Food choices are very limited at higher ratios and if ketones and seizure control are maintained at a lower ratio than that is going to be better in terms of the food choices. In terms of the calories from fat there really isn't a huge difference between 4 to 1 and 4.5 to 1. At 4 to 1, 90% of energy is derived from fat and the rest from protein and carbohydrates. At 4.5 to 1, 91% of energy is derived from fat. Not much difference. There seems to be a much larger affect from choosing protein versus carbohydrate amounts, ideal weight, type of fat and the variations in individual children. Bill Ciolli wrote: > > Well, Bill, I just need to tell you that our very > successful Keto Clinic in Portland, Oregon, that has > put gotten hundreds of children through the diet > successfully will not put a child on a ratio higher > than 4.0:1, because they state emphatically that the > ratio is too high, period, no further discussion. I'm > quite sure knowing these people as I do, that this > emphatic of a statement means they've been there and > done that and have had really bad results for every > child who they've tried this ratio with. And that is > the reason why I'm unfraid to tell any parent that a > child that is on a 4.5:1 ratio is on a ratio that is > too high. So I am willing to say that that ratio is > too high. > > mom to Chase, 8 1/2 yrs old, > ketokid since 3/00, med-free since 3/01 > but still having seizures > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Diane, Now, that's what I call " fine tuning " ! Diane Wall wrote: Another, Another point we tried the flax with very dramatic raise in > ketones-which we discovered raised his ketones too high. Go real slow with > it. We use MCT Oil as a calculated in snack between meals in his koolaid. > I have had wonderful results with it. If his ketones are too high lower it > by 1 ml, if he is too low raise it by 1 ml. It works very well for > us-although alot of other Mom's don't like it. I was thinking of using cream as a " keto " snack. When you use the MCT oil, how do you " calculate it in " ? Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Hi Becky, I just wonder if the ketones could be too high? Some kids do better on lower ketones. All the steps adviced by the dr. and lowering the cals or increasing flax also tend to increase his ketones. Just a thought. I haven't been reading my mail for a few days, so I hope you have already solved the problem. Saro....Rohan's mum Cam wrote: > I sent a posting a couple of weeks ago about my son Connor. I only heard back from one person so I'm sending it out again because we need HELP! Connor has been on the diet since 10/00 and seizure free the whole time up until 1 month ago. Now he is having about 10 small myoclonic jerks a day. We finished weanning Depakote about 1 month before the seizures started up. Connor was still on phenobarb. We have ruled out any mistakes, taken away the sugar free pop, The Dr. upped the phenobarb because it wasn't at a theraputic level, changed the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two weeks ago. None of this has helped. Connor's betahydroxybutyrate level has gone from 69 when he was seizure free down to 43 at the start of the seizures and was 54 at the end of the fast. His urine keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 at night. The next plan is to try lowering his calories and see if that helps. I also am going to add some flax oil and increase > the MCT by a couple of grams. I also wonder if too much processed meat can lower keytones? Any suggestions will be great. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 Dear Bill Sorry this is such an old post.........I had 274 messages after camping this weekend and just got to it tonight. Here it goes and I know this is probablly not acceptable-but since my dietician wouldn't help me-I had some help from a Home-Care Diabetic Nurse. We would raise his oil by 1 ml in the snack -at the time of the day his ketones would drop. We did not calculate it in untill we figured if he needed it there or not-then we would re-work his meal plans and his snacks. It took us months to level his ketones out-slow but perfect!! I don't think it would necessaritly work for any other child-but Josh was so skinny-and he didn't gain a pound since he started the diet June 20, 2000. We only played with a total of 5 mls the whole time-adding in in the end 4 mls at night and taking away 1 ml at 2:00 snack. Sorry it is so confusing... Diane Re: Breakthrough Seizures > Diane, > > Now, that's what I call " fine tuning " ! > > Diane Wall wrote: > Another, Another point we tried the flax with very dramatic raise in > > ketones-which we discovered raised his ketones too high. Go real slow with > > it. We use MCT Oil as a calculated in snack between meals in his koolaid. > > I have had wonderful results with it. If his ketones are too high lower it > > by 1 ml, if he is too low raise it by 1 ml. It works very well for > > us-although alot of other Mom's don't like it. > > I was thinking of using cream as a " keto " snack. When you use the MCT oil, how > do you " calculate it in " ? > > Bill > > " 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 July 17, 2001 Report Share Posted July 17, 2001 Diane, Thanks for taking the time to write. I can see how this might work, but I was thinking about adding in extra about 2 hours or so before the ketone drop or seizure. I am getting seizures at 10:30 am and 2:30 pm as well as early morning. At first I thought that it was the tegretol, but now we are weaned from that so it must have to do with the diet. We are on 4:1 ratio now so we will have to go up in ratio to no man or womans land. is super skinny too so she doesn't bave the fat stores to ride her through the low fat times. Bill Diane Wall wrote: > > Dear Bill > > Sorry this is such an old post.........I had 274 messages after camping this > weekend and just got to it tonight. Here it goes and I know this is > probablly not acceptable-but since my dietician wouldn't help me-I had some > help from a Home-Care Diabetic Nurse. We would raise his oil by 1 ml in the > snack -at the time of the day his ketones would drop. We did not calculate > it in untill we figured if he needed it there or not-then we would re-work > his meal plans and his snacks. It took us months to level his ketones > out-slow but perfect!! I don't think it would necessaritly work for any > other child-but Josh was so skinny-and he didn't gain a pound since he > started the diet June 20, 2000. > > We only played with a total of 5 mls the whole time-adding in in the end 4 > mls at night and taking away 1 ml at 2:00 snack. > > Sorry it is so confusing... > > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Dear Bill: sounds like my boney-skinny little . I ended up raising his night snack by 5 mls and lowering his 2:30 snack by 1-but it took forever to figure that one out. I know most parents keep each snack the same but Josh needed that extra oil before bed to carry him thru to the morning. Good Luck, too bad I couldn't send you my diabetic nurse to help you out !! Diane Re: Breakthrough Seizures > Diane, > > Thanks for taking the time to write. I can see how this might work, but I was > thinking about adding in extra about 2 hours or so before the ketone drop or > seizure. I am getting seizures at 10:30 am and 2:30 pm as well as early > morning. At first I thought that it was the tegretol, but now we are weaned > from that so it must have to do with the diet. We are on 4:1 ratio now so we > will have to go up in ratio to no man or womans land. is super skinny > too so she doesn't bave the fat stores to ride her through the low fat times. > > Bill > > Diane Wall wrote: > > > > Dear Bill > > > > Sorry this is such an old post.........I had 274 messages after camping this > > weekend and just got to it tonight. Here it goes and I know this is > > probablly not acceptable-but since my dietician wouldn't help me-I had some > > help from a Home-Care Diabetic Nurse. We would raise his oil by 1 ml in the > > snack -at the time of the day his ketones would drop. We did not calculate > > it in untill we figured if he needed it there or not-then we would re-work > > his meal plans and his snacks. It took us months to level his ketones > > out-slow but perfect!! I don't think it would necessaritly work for any > > other child-but Josh was so skinny-and he didn't gain a pound since he > > started the diet June 20, 2000. > > > > We only played with a total of 5 mls the whole time-adding in in the end 4 > > mls at night and taking away 1 ml at 2:00 snack. > > > > Sorry it is so confusing... > > > > Diane > > " 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 July 20, 2001 Report Share Posted July 20, 2001 Diane, This makes a lot of sense. After gets back from camp, we can start to work on this again. Bill Diane Wall wrote: > > Dear Bill: > > sounds like my boney-skinny little . I ended up raising his > night snack by 5 mls and lowering his 2:30 snack by 1-but it took forever to > figure that one out. I know most parents keep each snack the same but Josh > needed that extra oil before bed to carry him thru to the morning. > > Good Luck, too bad I couldn't send you my diabetic nurse to help you out !! > > Diane > > Re: Breakthrough Seizures > > > Diane, > > > > Thanks for taking the time to write. I can see how this might work, but I > was > > thinking about adding in extra about 2 hours or so before the ketone drop > or > > seizure. I am getting seizures at 10:30 am and 2:30 pm as well as early > > morning. At first I thought that it was the tegretol, but now we are > weaned > > from that so it must have to do with the diet. We are on 4:1 ratio now so > we > > will have to go up in ratio to no man or womans land. is super > skinny > > too so she doesn't bave the fat stores to ride her through the low fat > times. > > > > Bill Quote Link to comment Share on other sites More sharing options...
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