Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Our daughter Katelyn has been on the ketogenic diet for 4 months and we have managed to reduce her seizures from 20 to 30 seizures a day every day to periods of 2 to 3 weeks of no seizures followed by periods of seizures for 2 to 3 weeks but with fewer seizures 3 to 5 a day and not every day. Like most parents we have tried different foods and supplements and the ones we have found to help our daughter most are a from a complementary medicine supplier called Metagenics or Healthworld. We make up a milkshake using Ketoslim which is a high protein whey powder with key nutrients it comes in chocolate, strawberry and vanilla. We use 2 grams of the powder with 1 raw egg, 100 mls of cream, teaspoons of lecithin, 1tspn of pysllium husks, 20mls of canola oil, 1 tspn of Metagenics Flora care for children which is a probiotic + immune strengthen and 1 tspn Metagenics N Acetyl Carnitine which is a mixture of N acetyl and levo carnitine every morning. We also had troubles with flax seed oil and most other oil causing seizures so we went back to butter and cream but our daughters cholesterol went up to 8.6 then 10.5 so we went back to oils again and the only oils that don't seem to cause seizures are Canola oil and we use Hemp seed oil mixed with it. Lastly go to 4:1 ratio every time we try to lower our daughters ratio the seizures definitely get worse. Hope this helps and remember be positive and give thanks to god Re: Help please Hi Is still on any meds? If she is, I would say that you need to lower them. The higher ratioj increases the side effects of the meds . . . and seizures can be one way that med toxicity can rear its ugly head. Yes, flax seed oil causes increases seizures in many (but not all) children with seizures. Jill At 12:36 PM 9/13/03, you wrote: >, our little daughter who will be 19 months on Monday has been >on the keto diet since June 23/03. We started at 3:1 and after one >month, when we did not see any major changes, our team recommended >that we increase the ratio to 3.58:1. After the last increase, >'s seizures have been slowly creeping up. Prior to the diet, >she was on the SCD and her seizures were somewhere between 10 - 15, >now they are more in the area of 15-20 myoclonics per day. We are >certainly not going in the right direction. > >The next recommended increase is 4:1. Is this what we should be >doing? Or should we just call if quits re. the keto diet since it >really has not helped so far at all? Is three months a fair trial? > >'s foods are all organic, she does not get any processed foods >and we do not use any free foods. I have cut out all glycemic foods >since the last increase, so that her meals consist of eggs, chicken, >beef or cheddar cheese as protein, and broccoli, zicchini or >caulifower as carbs. She gets tiny amounts of blueberries (2.7 >grams) or orange (3.3 grams) with her snack. > >I tried initially different oils as part of her fat, while on the >higher ratio (canola, flax, olive), but since we saw no difference, I >went back to butter. Is it true that flax seed oil can cause more >seizures? > > seems to be more in her own world which really worries me - >we think that she may be a little autistic. We have a developmental >assessment coming up in November, but she is not talking yet and >there are some other delays becoming more apparent. > >What to do? Any input would be welcome. >Ania, mom to , 18 months old, moyclonic seizures since October >2002, keto diet since June 2003 > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Our daughter Katelyn has been on the ketogenic diet for 4 months and we have managed to reduce her seizures from 20 to 30 seizures a day every day to periods of 2 to 3 weeks of no seizures followed by periods of seizures for 2 to 3 weeks but with fewer seizures 3 to 5 a day and not every day. Like most parents we have tried different foods and supplements and the ones we have found to help our daughter most are a from a complementary medicine supplier called Metagenics or Healthworld. We make up a milkshake using Ketoslim which is a high protein whey powder with key nutrients it comes in chocolate, strawberry and vanilla. We use 2 grams of the powder with 1 raw egg, 100 mls of cream, teaspoons of lecithin, 1tspn of pysllium husks, 20mls of canola oil, 1 tspn of Metagenics Flora care for children which is a probiotic + immune strengthen and 1 tspn Metagenics N Acetyl Carnitine which is a mixture of N acetyl and levo carnitine every morning. We also had troubles with flax seed oil and most other oil causing seizures so we went back to butter and cream but our daughters cholesterol went up to 8.6 then 10.5 so we went back to oils again and the only oils that don't seem to cause seizures are Canola oil and we use Hemp seed oil mixed with it. Lastly go to 4:1 ratio every time we try to lower our daughters ratio the seizures definitely get worse. Hope this helps and remember be positive and give thanks to god Re: Help please Hi Is still on any meds? If she is, I would say that you need to lower them. The higher ratioj increases the side effects of the meds . . . and seizures can be one way that med toxicity can rear its ugly head. Yes, flax seed oil causes increases seizures in many (but not all) children with seizures. Jill At 12:36 PM 9/13/03, you wrote: >, our little daughter who will be 19 months on Monday has been >on the keto diet since June 23/03. We started at 3:1 and after one >month, when we did not see any major changes, our team recommended >that we increase the ratio to 3.58:1. After the last increase, >'s seizures have been slowly creeping up. Prior to the diet, >she was on the SCD and her seizures were somewhere between 10 - 15, >now they are more in the area of 15-20 myoclonics per day. We are >certainly not going in the right direction. > >The next recommended increase is 4:1. Is this what we should be >doing? Or should we just call if quits re. the keto diet since it >really has not helped so far at all? Is three months a fair trial? > >'s foods are all organic, she does not get any processed foods >and we do not use any free foods. I have cut out all glycemic foods >since the last increase, so that her meals consist of eggs, chicken, >beef or cheddar cheese as protein, and broccoli, zicchini or >caulifower as carbs. She gets tiny amounts of blueberries (2.7 >grams) or orange (3.3 grams) with her snack. > >I tried initially different oils as part of her fat, while on the >higher ratio (canola, flax, olive), but since we saw no difference, I >went back to butter. Is it true that flax seed oil can cause more >seizures? > > seems to be more in her own world which really worries me - >we think that she may be a little autistic. We have a developmental >assessment coming up in November, but she is not talking yet and >there are some other delays becoming more apparent. > >What to do? Any input would be welcome. >Ania, mom to , 18 months old, moyclonic seizures since October >2002, keto diet since June 2003 > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Is still on any meds? If she is, I would say that you need to lower them. The higher ratioj increases the side effects of the meds . . . and seizures can be one way that med toxicity can rear its ugly head. Yes, flax seed oil causes increases seizures in many (but not all) children with seizures. Jill At 12:36 PM 9/13/03, you wrote: >, our little daughter who will be 19 months on Monday has been >on the keto diet since June 23/03. We started at 3:1 and after one >month, when we did not see any major changes, our team recommended >that we increase the ratio to 3.58:1. After the last increase, >'s seizures have been slowly creeping up. Prior to the diet, >she was on the SCD and her seizures were somewhere between 10 - 15, >now they are more in the area of 15-20 myoclonics per day. We are >certainly not going in the right direction. > >The next recommended increase is 4:1. Is this what we should be >doing? Or should we just call if quits re. the keto diet since it >really has not helped so far at all? Is three months a fair trial? > >'s foods are all organic, she does not get any processed foods >and we do not use any free foods. I have cut out all glycemic foods >since the last increase, so that her meals consist of eggs, chicken, >beef or cheddar cheese as protein, and broccoli, zicchini or >caulifower as carbs. She gets tiny amounts of blueberries (2.7 >grams) or orange (3.3 grams) with her snack. > >I tried initially different oils as part of her fat, while on the >higher ratio (canola, flax, olive), but since we saw no difference, I >went back to butter. Is it true that flax seed oil can cause more >seizures? > > seems to be more in her own world which really worries me - >we think that she may be a little autistic. We have a developmental >assessment coming up in November, but she is not talking yet and >there are some other delays becoming more apparent. > >What to do? Any input would be welcome. >Ania, mom to , 18 months old, moyclonic seizures since October >2002, keto diet since June 2003 > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Is still on any meds? If she is, I would say that you need to lower them. The higher ratioj increases the side effects of the meds . . . and seizures can be one way that med toxicity can rear its ugly head. Yes, flax seed oil causes increases seizures in many (but not all) children with seizures. Jill At 12:36 PM 9/13/03, you wrote: >, our little daughter who will be 19 months on Monday has been >on the keto diet since June 23/03. We started at 3:1 and after one >month, when we did not see any major changes, our team recommended >that we increase the ratio to 3.58:1. After the last increase, >'s seizures have been slowly creeping up. Prior to the diet, >she was on the SCD and her seizures were somewhere between 10 - 15, >now they are more in the area of 15-20 myoclonics per day. We are >certainly not going in the right direction. > >The next recommended increase is 4:1. Is this what we should be >doing? Or should we just call if quits re. the keto diet since it >really has not helped so far at all? Is three months a fair trial? > >'s foods are all organic, she does not get any processed foods >and we do not use any free foods. I have cut out all glycemic foods >since the last increase, so that her meals consist of eggs, chicken, >beef or cheddar cheese as protein, and broccoli, zicchini or >caulifower as carbs. She gets tiny amounts of blueberries (2.7 >grams) or orange (3.3 grams) with her snack. > >I tried initially different oils as part of her fat, while on the >higher ratio (canola, flax, olive), but since we saw no difference, I >went back to butter. Is it true that flax seed oil can cause more >seizures? > > seems to be more in her own world which really worries me - >we think that she may be a little autistic. We have a developmental >assessment coming up in November, but she is not talking yet and >there are some other delays becoming more apparent. > >What to do? Any input would be welcome. >Ania, mom to , 18 months old, moyclonic seizures since October >2002, keto diet since June 2003 > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Is still on any meds? If she is, I would say that you need to lower them. The higher ratioj increases the side effects of the meds . . . and seizures can be one way that med toxicity can rear its ugly head. Yes, flax seed oil causes increases seizures in many (but not all) children with seizures. Jill At 12:36 PM 9/13/03, you wrote: >, our little daughter who will be 19 months on Monday has been >on the keto diet since June 23/03. We started at 3:1 and after one >month, when we did not see any major changes, our team recommended >that we increase the ratio to 3.58:1. After the last increase, >'s seizures have been slowly creeping up. Prior to the diet, >she was on the SCD and her seizures were somewhere between 10 - 15, >now they are more in the area of 15-20 myoclonics per day. We are >certainly not going in the right direction. > >The next recommended increase is 4:1. Is this what we should be >doing? Or should we just call if quits re. the keto diet since it >really has not helped so far at all? Is three months a fair trial? > >'s foods are all organic, she does not get any processed foods >and we do not use any free foods. I have cut out all glycemic foods >since the last increase, so that her meals consist of eggs, chicken, >beef or cheddar cheese as protein, and broccoli, zicchini or >caulifower as carbs. She gets tiny amounts of blueberries (2.7 >grams) or orange (3.3 grams) with her snack. > >I tried initially different oils as part of her fat, while on the >higher ratio (canola, flax, olive), but since we saw no difference, I >went back to butter. Is it true that flax seed oil can cause more >seizures? > > seems to be more in her own world which really worries me - >we think that she may be a little autistic. We have a developmental >assessment coming up in November, but she is not talking yet and >there are some other delays becoming more apparent. > >What to do? Any input would be welcome. >Ania, mom to , 18 months old, moyclonic seizures since October >2002, keto diet since June 2003 > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Thanks for the suggestion, but I forgot to mention that has been off meds since March 2003, since they only made things MUCH worse. We have only tried the flax seed oil for maybe 10 -14 days. It is gone now and still no improvement either way. Ania, mom to , 19 months old and living with seizures for longer than she has been seizure-free. > Hi > Is still on any meds? If she is, I would say that you need to lower > them. The higher ratioj increases the side effects of the meds . . . and > seizures can be one way that med toxicity can rear its ugly head. > > Yes, flax seed oil causes increases seizures in many (but not all) children > with seizures. > Jill > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Ania When does seem to have most of these seizures? Is it any particular time of day? before or after food? Do you have a blood glucose monitor? If so, what are her levels like? If not, it would be a good idea to get hold of one to help with fine tuning the diet. If levels are too low or too high you may see problems with seizures. What sort of ketones are you getting with the current ratio? What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. Have her Carnitine levels been checked for a deficiency? Try to keep your chin up. Three months is not long to trial the diet. There is a lot you can do to finetune to get better results. Jill At 10:35 PM 9/13/03, you wrote: >Thanks for the suggestion, but I forgot to mention that has >been off meds since March 2003, since they only made things MUCH >worse. > >We have only tried the flax seed oil for maybe 10 -14 days. It is >gone now and still no improvement either way. > >Ania, mom to , 19 months old and living with seizures for >longer than she has been seizure-free. > > > Hi > > Is still on any meds? If she is, I would say that you need >to lower > > them. The higher ratioj increases the side effects of the >meds . . . and > > seizures can be one way that med toxicity can rear its ugly head. > > > > Yes, flax seed oil causes increases seizures in many (but not all) >children > > with seizures. > > Jill > > > > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Ania When does seem to have most of these seizures? Is it any particular time of day? before or after food? Do you have a blood glucose monitor? If so, what are her levels like? If not, it would be a good idea to get hold of one to help with fine tuning the diet. If levels are too low or too high you may see problems with seizures. What sort of ketones are you getting with the current ratio? What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. Have her Carnitine levels been checked for a deficiency? Try to keep your chin up. Three months is not long to trial the diet. There is a lot you can do to finetune to get better results. Jill At 10:35 PM 9/13/03, you wrote: >Thanks for the suggestion, but I forgot to mention that has >been off meds since March 2003, since they only made things MUCH >worse. > >We have only tried the flax seed oil for maybe 10 -14 days. It is >gone now and still no improvement either way. > >Ania, mom to , 19 months old and living with seizures for >longer than she has been seizure-free. > > > Hi > > Is still on any meds? If she is, I would say that you need >to lower > > them. The higher ratioj increases the side effects of the >meds . . . and > > seizures can be one way that med toxicity can rear its ugly head. > > > > Yes, flax seed oil causes increases seizures in many (but not all) >children > > with seizures. > > Jill > > > > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 Hi Ania When does seem to have most of these seizures? Is it any particular time of day? before or after food? Do you have a blood glucose monitor? If so, what are her levels like? If not, it would be a good idea to get hold of one to help with fine tuning the diet. If levels are too low or too high you may see problems with seizures. What sort of ketones are you getting with the current ratio? What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. Have her Carnitine levels been checked for a deficiency? Try to keep your chin up. Three months is not long to trial the diet. There is a lot you can do to finetune to get better results. Jill At 10:35 PM 9/13/03, you wrote: >Thanks for the suggestion, but I forgot to mention that has >been off meds since March 2003, since they only made things MUCH >worse. > >We have only tried the flax seed oil for maybe 10 -14 days. It is >gone now and still no improvement either way. > >Ania, mom to , 19 months old and living with seizures for >longer than she has been seizure-free. > > > Hi > > Is still on any meds? If she is, I would say that you need >to lower > > them. The higher ratioj increases the side effects of the >meds . . . and > > seizures can be one way that med toxicity can rear its ugly head. > > > > Yes, flax seed oil causes increases seizures in many (but not all) >children > > with seizures. > > Jill > > > > > > > > " 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 13, 2003 Report Share Posted September 13, 2003 I don't think I would try upping ratio if last ratio increase made things worse. I would consider lowering ratio instead, if she did well on SCD diet, she may not need high ketones. Some kids do better with smaller ketones. So I would try a few things before giving up, like playing with calories and ratio change. Just remember, the golden rule - one change at a time and wait a good 3 to 4 weeks in between. Each change is a metabolic change and takes time for body to process Jill wrote: > Hi Ania > When does seem to have most of these seizures? Is it any > particular > time of day? before or after food? > > Do you have a blood glucose monitor? If so, what are her levels like? > If > not, it would be a good idea to get hold of one to help with fine > tuning > the diet. If levels are too low or too high you may see problems with > > seizures. What sort of ketones are you getting with the current ratio? > > What are her calories like? Is she gaining or losing weight? Too many > or > too few calories can also cause problems. > > Have her Carnitine levels been checked for a deficiency? > > Try to keep your chin up. Three months is not long to trial the diet. > > There is a lot you can do to finetune to get better results. > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 I don't think I would try upping ratio if last ratio increase made things worse. I would consider lowering ratio instead, if she did well on SCD diet, she may not need high ketones. Some kids do better with smaller ketones. So I would try a few things before giving up, like playing with calories and ratio change. Just remember, the golden rule - one change at a time and wait a good 3 to 4 weeks in between. Each change is a metabolic change and takes time for body to process Jill wrote: > Hi Ania > When does seem to have most of these seizures? Is it any > particular > time of day? before or after food? > > Do you have a blood glucose monitor? If so, what are her levels like? > If > not, it would be a good idea to get hold of one to help with fine > tuning > the diet. If levels are too low or too high you may see problems with > > seizures. What sort of ketones are you getting with the current ratio? > > What are her calories like? Is she gaining or losing weight? Too many > or > too few calories can also cause problems. > > Have her Carnitine levels been checked for a deficiency? > > Try to keep your chin up. Three months is not long to trial the diet. > > There is a lot you can do to finetune to get better results. > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 I don't think I would try upping ratio if last ratio increase made things worse. I would consider lowering ratio instead, if she did well on SCD diet, she may not need high ketones. Some kids do better with smaller ketones. So I would try a few things before giving up, like playing with calories and ratio change. Just remember, the golden rule - one change at a time and wait a good 3 to 4 weeks in between. Each change is a metabolic change and takes time for body to process Jill wrote: > Hi Ania > When does seem to have most of these seizures? Is it any > particular > time of day? before or after food? > > Do you have a blood glucose monitor? If so, what are her levels like? > If > not, it would be a good idea to get hold of one to help with fine > tuning > the diet. If levels are too low or too high you may see problems with > > seizures. What sort of ketones are you getting with the current ratio? > > What are her calories like? Is she gaining or losing weight? Too many > or > too few calories can also cause problems. > > Have her Carnitine levels been checked for a deficiency? > > Try to keep your chin up. Three months is not long to trial the diet. > > There is a lot you can do to finetune to get better results. > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Ania, How long was on the SCD? You might want to consider doing an SCD/Keto combination. You didn't mention what kind of ketone readings you're seeing. Have you not been able to get good strong ketones? That must be the case or your team would not be increasing the ratio. Some kids, especially the younger ones, can even seize MORE on higher ratios. I would double check calories. Depending on her weight (gaining? losing?) she may have too many calories coming in. This can definitely influence control. Our team likes the kids to be on the skinny side..... they just see better control in the kids who are around the 25th percentile for weight. Hope some of this helps.... Patti, mom to Katera, former Keto kid for over 2 yrs, now on SCD 5 months and doing great. Help please , our little daughter who will be 19 months on Monday has been on the keto diet since June 23/03. We started at 3:1 and after one month, when we did not see any major changes, our team recommended that we increase the ratio to 3.58:1. After the last increase, 's seizures have been slowly creeping up. Prior to the diet, she was on the SCD and her seizures were somewhere between 10 - 15, now they are more in the area of 15-20 myoclonics per day. We are certainly not going in the right direction. The next recommended increase is 4:1. Is this what we should be doing? Or should we just call if quits re. the keto diet since it really has not helped so far at all? Is three months a fair trial? 's foods are all organic, she does not get any processed foods and we do not use any free foods. I have cut out all glycemic foods since the last increase, so that her meals consist of eggs, chicken, beef or cheddar cheese as protein, and broccoli, zicchini or caulifower as carbs. She gets tiny amounts of blueberries (2.7 grams) or orange (3.3 grams) with her snack. I tried initially different oils as part of her fat, while on the higher ratio (canola, flax, olive), but since we saw no difference, I went back to butter. Is it true that flax seed oil can cause more seizures? seems to be more in her own world which really worries me - we think that she may be a little autistic. We have a developmental assessment coming up in November, but she is not talking yet and there are some other delays becoming more apparent. What to do? Any input would be welcome. Ania, mom to , 18 months old, moyclonic seizures since October 2002, keto diet since June 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Ania, How long was on the SCD? You might want to consider doing an SCD/Keto combination. You didn't mention what kind of ketone readings you're seeing. Have you not been able to get good strong ketones? That must be the case or your team would not be increasing the ratio. Some kids, especially the younger ones, can even seize MORE on higher ratios. I would double check calories. Depending on her weight (gaining? losing?) she may have too many calories coming in. This can definitely influence control. Our team likes the kids to be on the skinny side..... they just see better control in the kids who are around the 25th percentile for weight. Hope some of this helps.... Patti, mom to Katera, former Keto kid for over 2 yrs, now on SCD 5 months and doing great. Help please , our little daughter who will be 19 months on Monday has been on the keto diet since June 23/03. We started at 3:1 and after one month, when we did not see any major changes, our team recommended that we increase the ratio to 3.58:1. After the last increase, 's seizures have been slowly creeping up. Prior to the diet, she was on the SCD and her seizures were somewhere between 10 - 15, now they are more in the area of 15-20 myoclonics per day. We are certainly not going in the right direction. The next recommended increase is 4:1. Is this what we should be doing? Or should we just call if quits re. the keto diet since it really has not helped so far at all? Is three months a fair trial? 's foods are all organic, she does not get any processed foods and we do not use any free foods. I have cut out all glycemic foods since the last increase, so that her meals consist of eggs, chicken, beef or cheddar cheese as protein, and broccoli, zicchini or caulifower as carbs. She gets tiny amounts of blueberries (2.7 grams) or orange (3.3 grams) with her snack. I tried initially different oils as part of her fat, while on the higher ratio (canola, flax, olive), but since we saw no difference, I went back to butter. Is it true that flax seed oil can cause more seizures? seems to be more in her own world which really worries me - we think that she may be a little autistic. We have a developmental assessment coming up in November, but she is not talking yet and there are some other delays becoming more apparent. What to do? Any input would be welcome. Ania, mom to , 18 months old, moyclonic seizures since October 2002, keto diet since June 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Jill, > When does seem to have most of these seizures? Is it any particular time of day? before or after food? We did keep a very accurate log for a coule of weeks and found that she seems to simply get them throughout the day typical break down was: 3 before breakfast, 5-6 between breakfast and lunch, 5-6 between lunch and dinner, another 3 between diner and bedtime snack. > > Do you have a blood glucose monitor? If so, what are her levels like? We measured her b/g for the first month twice every day and her levels were consistently between 3.3 and 4.4. Since we started the diet, had not had any hypoglycemic symptoms either. What sort of ketones are you getting with the current ratio? > Her ketones are between 4 - 16. How stable should the ketones be? Should there be only minimal variation? At a certain point I charted her seizures and ketones throughout the day and there was no correlation between levels of ketones and the number of jerks or alertnes for that matter. > What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. > She has not gained any weight since we started the diet in June, but she has grown in height. > Have her Carnitine levels been checked for a deficiency? Carnetine was fine. > I am not sure what else we can do. Sometimes I don't think that our team is trying to help us hard enough and that all finetuning avenues have not been exausted. Maybe there is something really simple that is bothering her. Maybe it is the lactose in the cream? I brought these issues up with our team but I feel that they fall onto deaf ears. Thanks for your help and ideas, Ania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Jill, > When does seem to have most of these seizures? Is it any particular time of day? before or after food? We did keep a very accurate log for a coule of weeks and found that she seems to simply get them throughout the day typical break down was: 3 before breakfast, 5-6 between breakfast and lunch, 5-6 between lunch and dinner, another 3 between diner and bedtime snack. > > Do you have a blood glucose monitor? If so, what are her levels like? We measured her b/g for the first month twice every day and her levels were consistently between 3.3 and 4.4. Since we started the diet, had not had any hypoglycemic symptoms either. What sort of ketones are you getting with the current ratio? > Her ketones are between 4 - 16. How stable should the ketones be? Should there be only minimal variation? At a certain point I charted her seizures and ketones throughout the day and there was no correlation between levels of ketones and the number of jerks or alertnes for that matter. > What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. > She has not gained any weight since we started the diet in June, but she has grown in height. > Have her Carnitine levels been checked for a deficiency? Carnetine was fine. > I am not sure what else we can do. Sometimes I don't think that our team is trying to help us hard enough and that all finetuning avenues have not been exausted. Maybe there is something really simple that is bothering her. Maybe it is the lactose in the cream? I brought these issues up with our team but I feel that they fall onto deaf ears. Thanks for your help and ideas, Ania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Jill, > When does seem to have most of these seizures? Is it any particular time of day? before or after food? We did keep a very accurate log for a coule of weeks and found that she seems to simply get them throughout the day typical break down was: 3 before breakfast, 5-6 between breakfast and lunch, 5-6 between lunch and dinner, another 3 between diner and bedtime snack. > > Do you have a blood glucose monitor? If so, what are her levels like? We measured her b/g for the first month twice every day and her levels were consistently between 3.3 and 4.4. Since we started the diet, had not had any hypoglycemic symptoms either. What sort of ketones are you getting with the current ratio? > Her ketones are between 4 - 16. How stable should the ketones be? Should there be only minimal variation? At a certain point I charted her seizures and ketones throughout the day and there was no correlation between levels of ketones and the number of jerks or alertnes for that matter. > What are her calories like? Is she gaining or losing weight? Too many or too few calories can also cause problems. > She has not gained any weight since we started the diet in June, but she has grown in height. > Have her Carnitine levels been checked for a deficiency? Carnetine was fine. > I am not sure what else we can do. Sometimes I don't think that our team is trying to help us hard enough and that all finetuning avenues have not been exausted. Maybe there is something really simple that is bothering her. Maybe it is the lactose in the cream? I brought these issues up with our team but I feel that they fall onto deaf ears. Thanks for your help and ideas, Ania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Ania, Height gain without proportional weight gain, is an actual form of weight 'loss', it may be therefore that her calories need to inch up a bit. (unless you were actually aiming for weight loss?) Have you plotted her BMI? If you haven't checked BS since when she first started the diet, it might pay to restart for a short while, maybe even for a day or 2, just to check nothing has altered there - it is good you have a baseline to compare to. (wish we had) Ketones will fluctuate during the day somewhat - ie - lower in the morn, higher in evening, but going too high at night may indicate cal shortage during the day. ----- Original Message ----- > She has not gained any weight since we started the diet in June, but > she has grown in height. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Ania, Height gain without proportional weight gain, is an actual form of weight 'loss', it may be therefore that her calories need to inch up a bit. (unless you were actually aiming for weight loss?) Have you plotted her BMI? If you haven't checked BS since when she first started the diet, it might pay to restart for a short while, maybe even for a day or 2, just to check nothing has altered there - it is good you have a baseline to compare to. (wish we had) Ketones will fluctuate during the day somewhat - ie - lower in the morn, higher in evening, but going too high at night may indicate cal shortage during the day. ----- Original Message ----- > She has not gained any weight since we started the diet in June, but > she has grown in height. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Patti, was on the SCD only for a few weeks - about 6 -7 weeks or so. It took me a while to introduce it and take all the illegal foods out. I also have to confess that I never took the milk out because I was afraid of calcium deficiencies and no one could really recommend a proper supplement dosage for - I asked at the local healthfood stores, a naturopath etc. When it comes to the ketones, I was expecting for them to go completely dark on us with the increase in ratio, but they didn't. In fact in the middle of the day, they were the lowest (I found that out by accident after forgetting to take them in AM), that is when I did that charting of ketones three times per day and seizures throughout the day. We were getting about 8 in AM, 4 in mid day but sometimes they went as low as 1.5 - 4 and in the evening 8 - 16. As I mentioend in another email, has grown in height but after the initial slight drop, her weight has not budged neither up nor down. I may have to tak to you some more about the whole calcium, yogurt and milk issue. At this point both me and my husband are leaning toward taking off the keto diet and switching to SCD but this time doing the SCD fully re. NO milk or even goign dairy free for a while like the moms of autistic children do. Any other input is still welcome, Ania, one tired mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Patti, was on the SCD only for a few weeks - about 6 -7 weeks or so. It took me a while to introduce it and take all the illegal foods out. I also have to confess that I never took the milk out because I was afraid of calcium deficiencies and no one could really recommend a proper supplement dosage for - I asked at the local healthfood stores, a naturopath etc. When it comes to the ketones, I was expecting for them to go completely dark on us with the increase in ratio, but they didn't. In fact in the middle of the day, they were the lowest (I found that out by accident after forgetting to take them in AM), that is when I did that charting of ketones three times per day and seizures throughout the day. We were getting about 8 in AM, 4 in mid day but sometimes they went as low as 1.5 - 4 and in the evening 8 - 16. As I mentioend in another email, has grown in height but after the initial slight drop, her weight has not budged neither up nor down. I may have to tak to you some more about the whole calcium, yogurt and milk issue. At this point both me and my husband are leaning toward taking off the keto diet and switching to SCD but this time doing the SCD fully re. NO milk or even goign dairy free for a while like the moms of autistic children do. Any other input is still welcome, Ania, one tired mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Patti, was on the SCD only for a few weeks - about 6 -7 weeks or so. It took me a while to introduce it and take all the illegal foods out. I also have to confess that I never took the milk out because I was afraid of calcium deficiencies and no one could really recommend a proper supplement dosage for - I asked at the local healthfood stores, a naturopath etc. When it comes to the ketones, I was expecting for them to go completely dark on us with the increase in ratio, but they didn't. In fact in the middle of the day, they were the lowest (I found that out by accident after forgetting to take them in AM), that is when I did that charting of ketones three times per day and seizures throughout the day. We were getting about 8 in AM, 4 in mid day but sometimes they went as low as 1.5 - 4 and in the evening 8 - 16. As I mentioend in another email, has grown in height but after the initial slight drop, her weight has not budged neither up nor down. I may have to tak to you some more about the whole calcium, yogurt and milk issue. At this point both me and my husband are leaning toward taking off the keto diet and switching to SCD but this time doing the SCD fully re. NO milk or even goign dairy free for a while like the moms of autistic children do. Any other input is still welcome, Ania, one tired mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi , I doubt that we were aiming for weight loss, is tall for her age. She was always in the 90th percentile for height but going into the keto diet she was only in the 75th for weight. I know what you mean about the weight loss - I will have to bring it up with our keto team. I will be talking to the dietician on Monday. I will check the b/g but when she had her MRI two weeks ago, I had to monitor her b/g due to fasting prior to the MRI and it was 3.6. Thanks again for your input, Ania > > > ----- Original Message ----- > From: " rachaelsparents " <doughuang@s...> > > > > She has not gained any weight since we started the diet in June, but > > she has grown in height. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi , I doubt that we were aiming for weight loss, is tall for her age. She was always in the 90th percentile for height but going into the keto diet she was only in the 75th for weight. I know what you mean about the weight loss - I will have to bring it up with our keto team. I will be talking to the dietician on Monday. I will check the b/g but when she had her MRI two weeks ago, I had to monitor her b/g due to fasting prior to the MRI and it was 3.6. Thanks again for your input, Ania > > > ----- Original Message ----- > From: " rachaelsparents " <doughuang@s...> > > > > She has not gained any weight since we started the diet in June, but > > she has grown in height. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Ania, You said: << was on the SCD only for a few weeks - about 6 -7 weeks or so. It took me a while to introduce it and take all the illegal foods out. I also have to confess that I never took the milk out because I was afraid of calcium deficiencies <<I may have to tak to you some more about the whole calcium, yogurt and milk issue. At this point both me and my husband are leaning toward taking off the keto diet and switching to SCD but this time doing the SCD fully re. NO milk or even goign dairy free for a while like the moms of autistic children do.>> Honestly, I think you could stay on Keto and do SCD, too. You would just make the cream into yogurt, following the same directions. I don't think SCD had a chance to work before if you never stopped milk. I mean, if you really think you've done everything you can to tweak the Keto diet and you're still not seeing control.... well, it's really up to you. The ketone fluctuations are not a good thing. I know it's more common in the younger kids..... but you definitely prefer to see them staying much more stable..... like ranging between 80 and 160. write me any time..... Patti Quote Link to comment Share on other sites More sharing options...
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