Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 I finally found a moment to look at my old files on the diet. Just so you don't think that I am blowing smoke. 1. Epilepsia 40(12):1721-1726, 1999, ph Sirven et al. " The Ketogenic Diet for Intractable Epilepsy in Adults: Preliminary Results. " This is a study of nine women and two men, aged 19-45 years. All were on medications and remained on them throughout the study. Of interest for people doing the diet here is the comments about protocol; " because there is evidence to suggest increased adverse effects with the use of the ketogenic diet together with topirimate or valproic acid, these drugs were eliminated in the month before admission or during admission. " The reference is " Balliban-Gil K. et al, Complications of the ketogenic diet. Epilepsia 1998;39:744-8. The study further noted in regard to medications, " Previous reports noted difficulties with maintaining the diet with valproic acid (Depakene, Epival), so this AED was discontinued before initiating the diet in those individuals. Because the risk of a metabolic acidosis is possible when the diet is used in combination with carbonic anhydrase inhibitors, topirimate (Topamax) and acetozolamide (Diamox) were stopped in patients taking these AEDs. " The results of the study were very similar to a study done by Barborka at the Mayo Clinic in 1930. 2. Epilepsia 39(7):744-748, 1998, Ballaban-Gil et al. " Complications of the Ketogenic Diet " The classic ketogenic diet was used for 52 children; 5 had serious adverse events. Of those 5, 4 were taking valproic acid along with the diet. A total of 25 children were taking valproic acid along with the diet. Two of the children developed severe hypoproteinemia within 4 weeks of initiation of the diet, and 1 of them also developed lipemia and hemolytic anemia. A third child developed Fanconi's renal tubular acidosis within 1 month of diet initiation. Two other children manifested marked increases in liver function tests, 1 during the initiation phase and the other 13 months later. When valproic acid was discontinued, 3 of the children's complications resolved. The toxicity related to valproic acid in 3 of the children was not related to the dosage or level. 3. Journal of Neurology (Study done at Children's Hospital Medical Centre of Cincinnati, 2000 by Best et al; media title, " Study warns of potential dangers of ketogenic diet may lead to life-threatening heart problems " ) Of 21 children, 15% developed dilated cardiomyopathy (an enlarged, poorly functioning heart muscle) and a prolonged QT interval (an electrical abnormality that can lead to a fast heart rhythm and sudden death) When taken off the diet, the problems went away. Children with the highest levels of beta-hydroxybutyrate had the most severe heart problems. Children should be followed closely with electrocardiograms and echocardiograms to detect the complications. 4. Journal of Urology August, 2000;164:464-466 (Study done at the Univerity of Michigan Medical Centre, by Keilb et al; media title, " Ketogenic diet linked with high rate of kidney stones " ) 4 children developed kidney stones while on the ketogenic diet. Time from starting the diet to detecting the kidney stones was an average of 18 months. Treatment consisted of fluid liberalization, and urinary alkalization with oral citrate. It is recommended that children on the diet be screened by urinalysis and renal ultrasonography at 1 and 2 years. 5. Chronic Epilepsy, Its Prognosis and Management, edited by M.R. Trimble, 1989 Wiley & Sons Ltd. Chapter 11, " Strategies of Antieplileptic Drug Treatment in Patients with Chronic Epilepsy " S. Duncan, National Hospital for Nervous Diseases, London, UK The study looked at the withdrawal of phenytion, carbamazepine and sodium valproate at two different rates; phenytoin, 50 mg decrements every 2 or 5 days, carbamazepine, 200 mg every 2 or 5 days, and sodium valproate, 200 mg every 2 or 4 days. The study found that the reduction of phenytoin and valproate were generally problem free. Withdrawal of carbamazepine was often associated with an increase in seizures even if its use does not appear to have helped in seizure control. The increase in seizures is likely to continue until the withdrawn drug is recommenced. In the case of a serious increase in seizures, diazepam should be given and the withdrawn drug reintroduced. Hope that helps, Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Thanks Bill. This looks like some good information. Mike _____ From: Bill Barber Sent: Thursday, November 04, 2004 11:43 PM To: ketogenic Subject: Research I finally found a moment to look at my old files on the diet. Just so you don't think that I am blowing smoke. 1. Epilepsia 40(12):1721-1726, 1999, ph Sirven et al. " The Ketogenic Diet for Intractable Epilepsy in Adults: Preliminary Results. " This is a study of nine women and two men, aged 19-45 years. All were on medications and remained on them throughout the study. Of interest for people doing the diet here is the comments about protocol; " because there is evidence to suggest increased adverse effects with the use of the ketogenic diet together with topirimate or valproic acid, these drugs were eliminated in the month before admission or during admission. " The reference is " Balliban-Gil K. et al, Complications of the ketogenic diet. Epilepsia 1998;39:744-8. The study further noted in regard to medications, " Previous reports noted difficulties with maintaining the diet with valproic acid (Depakene, Epival), so this AED was discontinued before initiating the diet in those individuals. Because the risk of a metabolic acidosis is possible when the diet is used in combination with carbonic anhydrase inhibitors, topirimate (Topamax) and acetozolamide (Diamox) were stopped in patients taking these AEDs. " The results of the study were very similar to a study done by Barborka at the Mayo Clinic in 1930. 2. Epilepsia 39(7):744-748, 1998, Ballaban-Gil et al. " Complications of the Ketogenic Diet " The classic ketogenic diet was used for 52 children; 5 had serious adverse events. Of those 5, 4 were taking valproic acid along with the diet. A total of 25 children were taking valproic acid along with the diet. Two of the children developed severe hypoproteinemia within 4 weeks of initiation of the diet, and 1 of them also developed lipemia and hemolytic anemia. A third child developed Fanconi's renal tubular acidosis within 1 month of diet initiation. Two other children manifested marked increases in liver function tests, 1 during the initiation phase and the other 13 months later. When valproic acid was discontinued, 3 of the children's complications resolved. The toxicity related to valproic acid in 3 of the children was not related to the dosage or level. 3. Journal of Neurology (Study done at Children's Hospital Medical Centre of Cincinnati, 2000 by Best et al; media title, " Study warns of potential dangers of ketogenic diet may lead to life-threatening heart problems " ) Of 21 children, 15% developed dilated cardiomyopathy (an enlarged, poorly functioning heart muscle) and a prolonged QT interval (an electrical abnormality that can lead to a fast heart rhythm and sudden death) When taken off the diet, the problems went away. Children with the highest levels of beta-hydroxybutyrate had the most severe heart problems. Children should be followed closely with electrocardiograms and echocardiograms to detect the complications. 4. Journal of Urology August, 2000;164:464-466 (Study done at the Univerity of Michigan Medical Centre, by Keilb et al; media title, " Ketogenic diet linked with high rate of kidney stones " ) 4 children developed kidney stones while on the ketogenic diet. Time from starting the diet to detecting the kidney stones was an average of 18 months. Treatment consisted of fluid liberalization, and urinary alkalization with oral citrate. It is recommended that children on the diet be screened by urinalysis and renal ultrasonography at 1 and 2 years. 5. Chronic Epilepsy, Its Prognosis and Management, edited by M.R. Trimble, 1989 Wiley & Sons Ltd. Chapter 11, " Strategies of Antieplileptic Drug Treatment in Patients with Chronic Epilepsy " S. Duncan, National Hospital for Nervous Diseases, London, UK The study looked at the withdrawal of phenytion, carbamazepine and sodium valproate at two different rates; phenytoin, 50 mg decrements every 2 or 5 days, carbamazepine, 200 mg every 2 or 5 days, and sodium valproate, 200 mg every 2 or 4 days. The study found that the reduction of phenytoin and valproate were generally problem free. Withdrawal of carbamazepine was often associated with an increase in seizures even if its use does not appear to have helped in seizure control. The increase in seizures is likely to continue until the withdrawn drug is recommenced. In the case of a serious increase in seizures, diazepam should be given and the withdrawn drug reintroduced. Hope that helps, 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 November 7, 2004 Report Share Posted November 7, 2004 Thanks for the research data...... This is quite alarming to read..... You are so resourceful.. Where do you find these research articles? We haven't had our son's levels checked since June. His ratio has increased to 4:1, his Depakene level has increased by 250 mg daily,.... and we're concerned about how his body is tolerating this..... I will push our neuro for an updated blood order..... Colton needs to nap about 3 hours daily, which really affets his school performance. He is still on a lot of medication. OUr neuro felt that he would be less sleepy if we removed the keppra first..... then the depakene. Any thoughts? Also, many of you who have weaned meds have talked about " tough times " during the weaning process. When Colton had break through seizures after our first medicine wean attempt, we caved..... and continue to give him a daily dose of the carbitrol (time release tegratol). Now we are attempting to reduce Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs a week over 10 weeks...... We are on week 2 now..... Thanks for any insight... , Colton's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Thanks for the research data...... This is quite alarming to read..... You are so resourceful.. Where do you find these research articles? We haven't had our son's levels checked since June. His ratio has increased to 4:1, his Depakene level has increased by 250 mg daily,.... and we're concerned about how his body is tolerating this..... I will push our neuro for an updated blood order..... Colton needs to nap about 3 hours daily, which really affets his school performance. He is still on a lot of medication. OUr neuro felt that he would be less sleepy if we removed the keppra first..... then the depakene. Any thoughts? Also, many of you who have weaned meds have talked about " tough times " during the weaning process. When Colton had break through seizures after our first medicine wean attempt, we caved..... and continue to give him a daily dose of the carbitrol (time release tegratol). Now we are attempting to reduce Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs a week over 10 weeks...... We are on week 2 now..... Thanks for any insight... , Colton's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Thanks for the research data...... This is quite alarming to read..... You are so resourceful.. Where do you find these research articles? We haven't had our son's levels checked since June. His ratio has increased to 4:1, his Depakene level has increased by 250 mg daily,.... and we're concerned about how his body is tolerating this..... I will push our neuro for an updated blood order..... Colton needs to nap about 3 hours daily, which really affets his school performance. He is still on a lot of medication. OUr neuro felt that he would be less sleepy if we removed the keppra first..... then the depakene. Any thoughts? Also, many of you who have weaned meds have talked about " tough times " during the weaning process. When Colton had break through seizures after our first medicine wean attempt, we caved..... and continue to give him a daily dose of the carbitrol (time release tegratol). Now we are attempting to reduce Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs a week over 10 weeks...... We are on week 2 now..... Thanks for any insight... , Colton's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My local epilepsy association, Epilepsy Toronto has a fairly good library. Or if I am in the hospital and have some time, I borrow a white coat and look in the hospital library. And the University of Toronto has several scientific and medical libraries. I don't know anything about those medications, just that my daughter used to sleep half the day until we weaned the medications. You usually have to wean slowly and there seem to be patterns of withdrawal seizures; day 3, day 5, things like that, even up to 2 weeks later. The tegretol has to be weaned slowly especially at the end. We had to visit the ER the first time we tried. With the tegretol you have to go very slowly especially at the end, 50, 25, 12, 6, etc. until you are giving the smallest split pill once a week. You won't see the full effect of the diet until you wean the medications. You will also probably have a child with a lot more energy. If the medications weren't controlling the seizures, they are probably causing seizures. The blood levels don't tell you as much as the behaviour. Sleeping 3 hours a day is a sign of drug toxicity. Bill hemlockridgePA@... wrote: > Thanks for the research data...... This is quite alarming to read..... You > are so resourceful.. Where do you find these research articles? We haven't had > our son's levels checked since June. His ratio has increased to 4:1, his > Depakene level has increased by 250 mg daily,.... and we're concerned about how > his body is tolerating this..... I will push our neuro for an updated blood > order..... > > Colton needs to nap about 3 hours daily, which really affets his school > performance. He is still on a lot of medication. OUr neuro felt that he would be > less sleepy if we removed the keppra first..... then the depakene. Any > thoughts? > > Also, many of you who have weaned meds have talked about " tough times " during > the weaning process. When Colton had break through seizures after our first > medicine wean attempt, we caved..... and continue to give him a daily dose of > the carbitrol (time release tegratol). Now we are attempting to reduce > Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs > a week over 10 weeks...... We are on week 2 now..... > > Thanks for any insight... > , Colton's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My local epilepsy association, Epilepsy Toronto has a fairly good library. Or if I am in the hospital and have some time, I borrow a white coat and look in the hospital library. And the University of Toronto has several scientific and medical libraries. I don't know anything about those medications, just that my daughter used to sleep half the day until we weaned the medications. You usually have to wean slowly and there seem to be patterns of withdrawal seizures; day 3, day 5, things like that, even up to 2 weeks later. The tegretol has to be weaned slowly especially at the end. We had to visit the ER the first time we tried. With the tegretol you have to go very slowly especially at the end, 50, 25, 12, 6, etc. until you are giving the smallest split pill once a week. You won't see the full effect of the diet until you wean the medications. You will also probably have a child with a lot more energy. If the medications weren't controlling the seizures, they are probably causing seizures. The blood levels don't tell you as much as the behaviour. Sleeping 3 hours a day is a sign of drug toxicity. Bill hemlockridgePA@... wrote: > Thanks for the research data...... This is quite alarming to read..... You > are so resourceful.. Where do you find these research articles? We haven't had > our son's levels checked since June. His ratio has increased to 4:1, his > Depakene level has increased by 250 mg daily,.... and we're concerned about how > his body is tolerating this..... I will push our neuro for an updated blood > order..... > > Colton needs to nap about 3 hours daily, which really affets his school > performance. He is still on a lot of medication. OUr neuro felt that he would be > less sleepy if we removed the keppra first..... then the depakene. Any > thoughts? > > Also, many of you who have weaned meds have talked about " tough times " during > the weaning process. When Colton had break through seizures after our first > medicine wean attempt, we caved..... and continue to give him a daily dose of > the carbitrol (time release tegratol). Now we are attempting to reduce > Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs > a week over 10 weeks...... We are on week 2 now..... > > Thanks for any insight... > , Colton's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My local epilepsy association, Epilepsy Toronto has a fairly good library. Or if I am in the hospital and have some time, I borrow a white coat and look in the hospital library. And the University of Toronto has several scientific and medical libraries. I don't know anything about those medications, just that my daughter used to sleep half the day until we weaned the medications. You usually have to wean slowly and there seem to be patterns of withdrawal seizures; day 3, day 5, things like that, even up to 2 weeks later. The tegretol has to be weaned slowly especially at the end. We had to visit the ER the first time we tried. With the tegretol you have to go very slowly especially at the end, 50, 25, 12, 6, etc. until you are giving the smallest split pill once a week. You won't see the full effect of the diet until you wean the medications. You will also probably have a child with a lot more energy. If the medications weren't controlling the seizures, they are probably causing seizures. The blood levels don't tell you as much as the behaviour. Sleeping 3 hours a day is a sign of drug toxicity. Bill hemlockridgePA@... wrote: > Thanks for the research data...... This is quite alarming to read..... You > are so resourceful.. Where do you find these research articles? We haven't had > our son's levels checked since June. His ratio has increased to 4:1, his > Depakene level has increased by 250 mg daily,.... and we're concerned about how > his body is tolerating this..... I will push our neuro for an updated blood > order..... > > Colton needs to nap about 3 hours daily, which really affets his school > performance. He is still on a lot of medication. OUr neuro felt that he would be > less sleepy if we removed the keppra first..... then the depakene. Any > thoughts? > > Also, many of you who have weaned meds have talked about " tough times " during > the weaning process. When Colton had break through seizures after our first > medicine wean attempt, we caved..... and continue to give him a daily dose of > the carbitrol (time release tegratol). Now we are attempting to reduce > Keppra. How long do we persevere if the seizures come back? We are weaning 250 mgs > a week over 10 weeks...... We are on week 2 now..... > > Thanks for any insight... > , Colton's mom > > > Quote Link to comment Share on other sites More sharing options...
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