Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Hi Carolyn, Yes, blood ketone monitoring is a lot more accurate than urine ketone tesing, too many variables otherwise between the time tested and from when the bladder last emptied etc. Urine testing works ok when things are stable, but when they are not, we found the blood ketone monitoring invaluable. I see others have already posted details of the monitors, and as I am in New Zealand, any details I have from down here would probably not be much use to you. I really am not sure where to advise you to head to next or who to consult, it sounds like things are not being done at all correctly over there, and I feel a bit helpless really to know where to start All I can suggest is that you demand some answers about how his diet is currently set, (how many calories, why he is on a 5:1 ratio etc) and firmly request that they seek a second opinion as soon as possible, and start including you more closely in his treatment decisions, including with his medications. He sounds absolutely toxic, and strong ketosis in conjunction with that is a dangerous mix for them to have him on. Please let me know if there is anything else I can specifically help you with, Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Hi Carolyn, Yes, blood ketone monitoring is a lot more accurate than urine ketone tesing, too many variables otherwise between the time tested and from when the bladder last emptied etc. Urine testing works ok when things are stable, but when they are not, we found the blood ketone monitoring invaluable. I see others have already posted details of the monitors, and as I am in New Zealand, any details I have from down here would probably not be much use to you. I really am not sure where to advise you to head to next or who to consult, it sounds like things are not being done at all correctly over there, and I feel a bit helpless really to know where to start All I can suggest is that you demand some answers about how his diet is currently set, (how many calories, why he is on a 5:1 ratio etc) and firmly request that they seek a second opinion as soon as possible, and start including you more closely in his treatment decisions, including with his medications. He sounds absolutely toxic, and strong ketosis in conjunction with that is a dangerous mix for them to have him on. Please let me know if there is anything else I can specifically help you with, Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Hi Carolyn, Yes, blood ketone monitoring is a lot more accurate than urine ketone tesing, too many variables otherwise between the time tested and from when the bladder last emptied etc. Urine testing works ok when things are stable, but when they are not, we found the blood ketone monitoring invaluable. I see others have already posted details of the monitors, and as I am in New Zealand, any details I have from down here would probably not be much use to you. I really am not sure where to advise you to head to next or who to consult, it sounds like things are not being done at all correctly over there, and I feel a bit helpless really to know where to start All I can suggest is that you demand some answers about how his diet is currently set, (how many calories, why he is on a 5:1 ratio etc) and firmly request that they seek a second opinion as soon as possible, and start including you more closely in his treatment decisions, including with his medications. He sounds absolutely toxic, and strong ketosis in conjunction with that is a dangerous mix for them to have him on. Please let me know if there is anything else I can specifically help you with, Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hello, My son has seizures non stop last night, itwas awful and I really don't know what to do. I haven't the book yet, I'm waiting for it to find advices.... Yesterday I've decided to decrease topiramate because he's really bad... I ordered the monitor for glycemia and ketosis...Do you think it could be worse with the diet if it's too much ketosis or not enough? After how many days we can see an improvement with the diet? I'm scared of these seizures and the hospital can't do anything else so I stay home with aël ... 9If you got some ideas or suggestions help us please, thank you Carolyn, aël's mum nearly 6 Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. " 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 5, 2004 Report Share Posted July 5, 2004 I know you are in a bad place, but if I was you I would be looking at decreasing drugs, not increasing. Not only is he on too high of a ratio (5:1) but the diet can alter the metabolism of the drugs, having the effect of upping the dose even though you haven't actually touched it. Hope I am making sense.....he may well be going toxic on the drug and diet combination and if so (which I really think there is a good chance he is), upping the dose of drugs will only make it worse. Would have a similar effect to upping diet ratio, which you sure wouldn't want to do either. If you can find a way to do it (can you calculate your own meals or get dietican to redo for you?), put him down to a 4:1 ratio. Wait at least a week (should actually be longer wait but if he is toxic on the drugs you may not have the time to wait), then start dropping the drugs a little. We have been doing the diet for over 6 years and I have been on the keto lists all that time. Although we haven't had this exact experience I have seen it happen to a fair number of kids. So those are my thoughts.....I really hope you don't up the topirimate, I really think it will only make things worse , 's mom caronath wrote: > Hello, > > My son has seizures non stop last night, itwas awful and I really > don't know what to do. > I haven't the book yet, I'm waiting for it to find advices.... > Yesterday I've decided to decrease topiramate because he's really > bad... > I ordered the monitor for glycemia and ketosis...Do you think it > could be worse with the diet if it's too much ketosis or not enough? > After how many days we can see an improvement with the diet? > I'm scared of these seizures and the hospital can't do anything else > so I stay home with aël ... > 9If you got some ideas or suggestions help us please, thank you > > Carolyn, aël's mum nearly 6 > Carolyn - ael and the keto diet > book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 > mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be > on per > day.... was 6 yrs old on that diaz dose at one point > too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him > down to > below 20 > mgs, and that was without phenobarb (can be equally > sedating) in the > equation. > A 5:1 ratio is way too high unless there is a specific > reason they > have > used this - I see you have been advised on here to get Dr > Freeman's > book, > and I second that. Your Drs need to be made aware that they > are > potentially > aggravating his condition (ie -seizures!!) with 2 strong > high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A > Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, > with > meals > spread fairly evenly over the day, and most find that a > snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the > total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if > aiming > for a > lower bodyweight, less calories will be allocated, meaning > body fat > will > probably be burnt as the weight is lost, so a lower ratio > would be > required > to prevent excess ketosis, with the opposite applying if > weight gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 > ratio, moving > up or > down depending on how easily they produce ketones and how > their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate > however. With > that > high ratio I would suspect he has fairly large ketones, and > if so, his > blood > gases (blood ph bicarb, base excess etc) should also be > checked to > make sure > he has not gone into metabolic acidosis. Glucose levels > should probaby > be > done regualarly too, as he is not getting very much in the > way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in > confirmation that he > is > probably toxic on a combination of a high ketogenic ratio > and > medications. > Weakness and paleness (usually with dark circles round the > eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, > with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 5, 2004 Report Share Posted July 5, 2004 Carolyn, do you have diastat to give your son when he continues to have seizures? If you don't get a prescription for it, it is rectal valium which helps to stop them and stop the child from clustering. We noticed a difference in stella immediately, she has not stopped seizing, but she doesn't have as many, she went from over 100 a day to 6 or so a week. She still has some bad days with clustering and we always give her the diastat now if she has more than 3 in an hour (these are the tonic clonic seizures lasting over 3-4 mins) Hang in there amanda >  Hello, > >  My son has seizures non stop last night, itwas awful and I really > don't know what to do. >  I haven't the book yet, I'm waiting for it to find advices.... >  Yesterday I've decided to decrease topiramate because he's really > bad... >  I ordered the monitor for glycemia and ketosis...Do you think it > could be worse with the diet if it's too much ketosis or not enough? >  After how many days we can see an improvement with the diet? >  I'm scared of these seizures and the hospital can't do anything else > so I stay home with aël ... >  9If you got some ideas or suggestions help us please, thank you > >  Carolyn, aël's mum nearly 6 >    Carolyn - ael and the keto diet > book > > >            Hi Carolyn, >            K, as a benchmark to compare to, 3 mgs clonaz = approx 30 > mgs >    diazepam, >          that is a LOT of benzodiazepine for a nearly 6 yr old to be > on per >          day.... was 6 yrs old on that diaz dose at one point > too (his >    was >          decreased from a massively ridiculous dose of 60 down to 30 > mgs), and >    he >          continued to have toxicity induced seizures till we got him > down to >    below 20 >          mgs, and that was without phenobarb (can be equally > sedating) in the >          equation. >            A 5:1 ratio is way too high unless there is a specific > reason they >    have >          used this - I see you have been advised on here to get Dr > Freeman's >    book, >          and I second that. Your Drs need to be made aware that they > are >    potentially >          aggravating his condition (ie -seizures!!) with 2 strong > high dose >    meds in >          combination with a very high ratio. >            The book's actual title is 'The ketogenic Diet - A > Treatment for >          Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. >            Authors are Freeman (Hopkins hosp in USA), > Freeman and >          Millicent . > >            Basically to see if they have his diet in a ballpark range > though, >    total >          calories for a 6 yr old are usually calculated at 65-68 cals > per kg of >          bodyweight, including protein at 1.1 gm per kg. If possible, > with >    meals >          spread fairly evenly over the day, and most find that a > snack right >    before >          bedtime helps keep ketones up overnight. >            If he is under or overweight for his height though, the > total >    calorie >          figure will probably be amended to aim towards his ideal > weight, and >    the >          ratio should then be adjusted accordingly. (for example - if > aiming >    for a >          lower bodyweight, less calories will be allocated, meaning > body fat >    will >          probably be burnt as the weight is lost, so a lower ratio > would be >    required >          to prevent excess ketosis, with the opposite applying if > weight gain >    is >          desired) >            Most kiddies are started out on between a 3.1 or 4:1 > ratio, moving >    up or >          down depending on how easily they produce ketones and how > their >    seizure >          control goes. >            Urine ketones on the diet usually range from 4-16, blood > ketones (if >    you >          can puchase a blood ketone monitor) are more accurate > however. With >    that >          high ratio I would suspect he has fairly large ketones, and > if so, his >    blood >          gases (blood ph bicarb, base excess etc) should also be > checked to >    make sure >          he has not gone into metabolic acidosis. Glucose levels > should probaby >    be >          done regualarly too, as he is not getting very much in the > way of >          carbohydrates. >            Can you persuade anyone there to phone or email Hopkins > hospital and >    seek >          advice, which I believe would actually result in > confirmation that he >    is >          probably toxic on a combination of a high ketogenic ratio and >    medications. >          Weakness and paleness (usually with dark circles round the > eyes), >    increased >          seizures, unsteadiness, legarthy, slurred or slowed speech, > with or >    without >          vomiting, were 's toxicity signs. > >            > > > > > > > > >      " 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 5, 2004 Report Share Posted July 5, 2004 , When you say diastat is a rectal valium...I give aël rectal valium ( here in france valium is a benzodiazepine) but it doesn't help at all but I'm not sure diastat is the same...I know valium intra rectal but I don't diastat. I'll try to get a prescription for Diastat to have an other solution because it's so hard to do with all these seizures, we don't sleep a ta ll,we're exhausted. Thanks Carolyn Carolyn - ael and the keto diet > book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 > mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be > on per > day.... was 6 yrs old on that diaz dose at one point > too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him > down to > below 20 > mgs, and that was without phenobarb (can be equally > sedating) in the > equation. > A 5:1 ratio is way too high unless there is a specific > reason they > have > used this - I see you have been advised on here to get Dr > Freeman's > book, > and I second that. Your Drs need to be made aware that they > are > potentially > aggravating his condition (ie -seizures!!) with 2 strong > high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A > Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, > with > meals > spread fairly evenly over the day, and most find that a > snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the > total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if > aiming > for a > lower bodyweight, less calories will be allocated, meaning > body fat > will > probably be burnt as the weight is lost, so a lower ratio > would be > required > to prevent excess ketosis, with the opposite applying if > weight gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 > ratio, moving > up or > down depending on how easily they produce ketones and how > their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate > however. With > that > high ratio I would suspect he has fairly large ketones, and > if so, his > blood > gases (blood ph bicarb, base excess etc) should also be > checked to > make sure > he has not gone into metabolic acidosis. Glucose levels > should probaby > be > done regualarly too, as he is not getting very much in the > way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in > confirmation that he > is > probably toxic on a combination of a high ketogenic ratio and > medications. > Weakness and paleness (usually with dark circles round the > eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, > with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 5, 2004 Report Share Posted July 5, 2004 Carolyn I forgot to mention the other prescription we have on hand if the rectal valium does not work is oral ativan at 1mg. Stella is 5 so I'm not sure what ael's does would be. I think we are using the same rectal valium the name might be different in France. Are you close to Poitier? I think that is how you spell it, we have some friends vacationing over there for the summer, if you needed anything from over here I could have it sent with them. I hope things get better soon for you. -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Carolyn I forgot to mention the other prescription we have on hand if the rectal valium does not work is oral ativan at 1mg. Stella is 5 so I'm not sure what ael's does would be. I think we are using the same rectal valium the name might be different in France. Are you close to Poitier? I think that is how you spell it, we have some friends vacationing over there for the summer, if you needed anything from over here I could have it sent with them. I hope things get better soon for you. -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Carolyn I forgot to mention the other prescription we have on hand if the rectal valium does not work is oral ativan at 1mg. Stella is 5 so I'm not sure what ael's does would be. I think we are using the same rectal valium the name might be different in France. Are you close to Poitier? I think that is how you spell it, we have some friends vacationing over there for the summer, if you needed anything from over here I could have it sent with them. I hope things get better soon for you. -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Carolyn, I really think your Drs need to know how bad things currently are seizure wise, and to be educated (by you if need be) on the dangers of med toxicity with a high keto ratio at the same time. Your question re things being worse with the diet if too much or not enough ketosis - well from a toxicity point of view - too much ketosis is defintely going to aggravate toxicity, (and therefore seizures) whereas low ketones will not be as impacting on the med effects. Too little ketosis however means he may not be getting sufficient ketone protection for his seizures fullstop. Hence the need to find out exactly where his blood ketones are at and whether things need adjusting. At a 5:1 ratio, my pick would be that his ketones are going far too high, and you probably need some lab tests to check this. Sooner rather than later. You also need to have blood gases checked to make sure he is not in metabolic acidosis. If his ketones are too high, this is a real possibility and can be dangerous. It is just too irresponsible of the hospital to place him on a medical diet without checking all these things, especially so soon after diet intiation, and especially when his seizures have worsened rather than improved. I think you are on the right track to look at decreasing medications, but as to which one...If he is acidotic, the topomax may be aggravating this (induces acidity), if he is on too much benzodiazepine medication, then it may be this one that needs targeting. But you need those blood results before you can make an informed decision, and for this reason, I personally would have him back in hospital for safety reasons, and to enable all these checks to be done. Do you have someone who can be an advocate on your behalf and demand that the hospital seek outside help - from an institution like Hopkins hospital in the USA, or any of the major keto centres. Time taken to see an improvement on the diet varies absolutely on an individual basis. For some it is literally overnight, for others it can take months of finetuning and sleuthing out potential problems (like med weaning, ratio, calories etc). Re the emergency medications, diastat is rectal valium, and ativan is another benzodiazepine, shorter half life but more impacting. The trouble is...if he is already toxic on this class of med, adding more will probably not help, it could in fact make him worse.And if too much is used, he will quickly become addicted to the emergency med as well - adding to the overall toxicity problem that I think he is facing. In a nutshell - yes, the hospital can do something else - they can undo the mess that it seems to me they have got him into. If that means they pick up a phone and seek outside help, then so be it. Are you recording all his seizure times, mealtimes, med times etc? If so, have you noticed any definite patterns - like times he is always more stable in the day, or times where he worsens? I really don't think by the sounds of things that you can afford to wait too much longer for either the keto diet book, or the glucometer/bhb monitor to arrive. These are things the hospital can test in the meantime, as well as the other tests I mentioned above. The information contained in the book can be easily accessed by physicians - by contacting the author direct if neccessary. This is all possible and there is no reason it should not be done. I really don't know what else to tell you right now, or what else to suggest, other than to stress that this is the hospital's responsibility. The burden you are carrying is simply too much, you need help, from someone over there who is able to carry out all the testing and diet adjustments that he seems in my opinion to need. ----- Original Message ----- Hello, My son has seizures non stop last night, itwas awful and I really don't know what to do. I haven't the book yet, I'm waiting for it to find advices.... Yesterday I've decided to decrease topiramate because he's really bad... I ordered the monitor for glycemia and ketosis...Do you think it could be worse with the diet if it's too much ketosis or not enough? After how many days we can see an improvement with the diet? I'm scared of these seizures and the hospital can't do anything else so I stay home with aël ... 9If you got some ideas or suggestions help us please, thank you Carolyn, aël's mum nearly 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Carolyn, I really think your Drs need to know how bad things currently are seizure wise, and to be educated (by you if need be) on the dangers of med toxicity with a high keto ratio at the same time. Your question re things being worse with the diet if too much or not enough ketosis - well from a toxicity point of view - too much ketosis is defintely going to aggravate toxicity, (and therefore seizures) whereas low ketones will not be as impacting on the med effects. Too little ketosis however means he may not be getting sufficient ketone protection for his seizures fullstop. Hence the need to find out exactly where his blood ketones are at and whether things need adjusting. At a 5:1 ratio, my pick would be that his ketones are going far too high, and you probably need some lab tests to check this. Sooner rather than later. You also need to have blood gases checked to make sure he is not in metabolic acidosis. If his ketones are too high, this is a real possibility and can be dangerous. It is just too irresponsible of the hospital to place him on a medical diet without checking all these things, especially so soon after diet intiation, and especially when his seizures have worsened rather than improved. I think you are on the right track to look at decreasing medications, but as to which one...If he is acidotic, the topomax may be aggravating this (induces acidity), if he is on too much benzodiazepine medication, then it may be this one that needs targeting. But you need those blood results before you can make an informed decision, and for this reason, I personally would have him back in hospital for safety reasons, and to enable all these checks to be done. Do you have someone who can be an advocate on your behalf and demand that the hospital seek outside help - from an institution like Hopkins hospital in the USA, or any of the major keto centres. Time taken to see an improvement on the diet varies absolutely on an individual basis. For some it is literally overnight, for others it can take months of finetuning and sleuthing out potential problems (like med weaning, ratio, calories etc). Re the emergency medications, diastat is rectal valium, and ativan is another benzodiazepine, shorter half life but more impacting. The trouble is...if he is already toxic on this class of med, adding more will probably not help, it could in fact make him worse.And if too much is used, he will quickly become addicted to the emergency med as well - adding to the overall toxicity problem that I think he is facing. In a nutshell - yes, the hospital can do something else - they can undo the mess that it seems to me they have got him into. If that means they pick up a phone and seek outside help, then so be it. Are you recording all his seizure times, mealtimes, med times etc? If so, have you noticed any definite patterns - like times he is always more stable in the day, or times where he worsens? I really don't think by the sounds of things that you can afford to wait too much longer for either the keto diet book, or the glucometer/bhb monitor to arrive. These are things the hospital can test in the meantime, as well as the other tests I mentioned above. The information contained in the book can be easily accessed by physicians - by contacting the author direct if neccessary. This is all possible and there is no reason it should not be done. I really don't know what else to tell you right now, or what else to suggest, other than to stress that this is the hospital's responsibility. The burden you are carrying is simply too much, you need help, from someone over there who is able to carry out all the testing and diet adjustments that he seems in my opinion to need. ----- Original Message ----- Hello, My son has seizures non stop last night, itwas awful and I really don't know what to do. I haven't the book yet, I'm waiting for it to find advices.... Yesterday I've decided to decrease topiramate because he's really bad... I ordered the monitor for glycemia and ketosis...Do you think it could be worse with the diet if it's too much ketosis or not enough? After how many days we can see an improvement with the diet? I'm scared of these seizures and the hospital can't do anything else so I stay home with aël ... 9If you got some ideas or suggestions help us please, thank you Carolyn, aël's mum nearly 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Carolyn, I really think your Drs need to know how bad things currently are seizure wise, and to be educated (by you if need be) on the dangers of med toxicity with a high keto ratio at the same time. Your question re things being worse with the diet if too much or not enough ketosis - well from a toxicity point of view - too much ketosis is defintely going to aggravate toxicity, (and therefore seizures) whereas low ketones will not be as impacting on the med effects. Too little ketosis however means he may not be getting sufficient ketone protection for his seizures fullstop. Hence the need to find out exactly where his blood ketones are at and whether things need adjusting. At a 5:1 ratio, my pick would be that his ketones are going far too high, and you probably need some lab tests to check this. Sooner rather than later. You also need to have blood gases checked to make sure he is not in metabolic acidosis. If his ketones are too high, this is a real possibility and can be dangerous. It is just too irresponsible of the hospital to place him on a medical diet without checking all these things, especially so soon after diet intiation, and especially when his seizures have worsened rather than improved. I think you are on the right track to look at decreasing medications, but as to which one...If he is acidotic, the topomax may be aggravating this (induces acidity), if he is on too much benzodiazepine medication, then it may be this one that needs targeting. But you need those blood results before you can make an informed decision, and for this reason, I personally would have him back in hospital for safety reasons, and to enable all these checks to be done. Do you have someone who can be an advocate on your behalf and demand that the hospital seek outside help - from an institution like Hopkins hospital in the USA, or any of the major keto centres. Time taken to see an improvement on the diet varies absolutely on an individual basis. For some it is literally overnight, for others it can take months of finetuning and sleuthing out potential problems (like med weaning, ratio, calories etc). Re the emergency medications, diastat is rectal valium, and ativan is another benzodiazepine, shorter half life but more impacting. The trouble is...if he is already toxic on this class of med, adding more will probably not help, it could in fact make him worse.And if too much is used, he will quickly become addicted to the emergency med as well - adding to the overall toxicity problem that I think he is facing. In a nutshell - yes, the hospital can do something else - they can undo the mess that it seems to me they have got him into. If that means they pick up a phone and seek outside help, then so be it. Are you recording all his seizure times, mealtimes, med times etc? If so, have you noticed any definite patterns - like times he is always more stable in the day, or times where he worsens? I really don't think by the sounds of things that you can afford to wait too much longer for either the keto diet book, or the glucometer/bhb monitor to arrive. These are things the hospital can test in the meantime, as well as the other tests I mentioned above. The information contained in the book can be easily accessed by physicians - by contacting the author direct if neccessary. This is all possible and there is no reason it should not be done. I really don't know what else to tell you right now, or what else to suggest, other than to stress that this is the hospital's responsibility. The burden you are carrying is simply too much, you need help, from someone over there who is able to carry out all the testing and diet adjustments that he seems in my opinion to need. ----- Original Message ----- Hello, My son has seizures non stop last night, itwas awful and I really don't know what to do. I haven't the book yet, I'm waiting for it to find advices.... Yesterday I've decided to decrease topiramate because he's really bad... I ordered the monitor for glycemia and ketosis...Do you think it could be worse with the diet if it's too much ketosis or not enough? After how many days we can see an improvement with the diet? I'm scared of these seizures and the hospital can't do anything else so I stay home with aël ... 9If you got some ideas or suggestions help us please, thank you Carolyn, aël's mum nearly 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Suzan, I really don't know what to do but aël is very bad, he's got seizure every 10 mn it's like if he'll be asphyxied! I put oxygen at each time, it's getting worse and worse... I've just check ketones with the ketostix it shows taht he's on high ketones over 1.6 but it isn't more precise... He vomits once today... He's convusing now, it's awful and I don't want to go back to the hospital if it's toxicity , otherwise it will be worse and worse because they 'll put him on drugs more and more again!!! Help us please! Carolyn ael's mum Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. " 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 6, 2004 Report Share Posted July 6, 2004 Hi Carolyn, Will your neurologist not listen to you? It seems like ael is definitely aggravated by benzodiazepines. This is a common trait with intractable epilepsy cases. It does seem that he needs urgent care, possibly an infusion to break the convulsive status. There are other drugs that can be used in intensive care. The ketones are likely too high and he may be acidotic. Can you give a little juice and see if that helps with the nausea and vomiting? Ann Shepard Re: Carolyn - ael Suzan, I really don't know what to do but aël is very bad, he's got seizure every 10 mn it's like if he'll be asphyxied! I put oxygen at each time, it's getting worse and worse... I've just check ketones with the ketostix it shows taht he's on high ketones over 1.6 but it isn't more precise... He vomits once today... He's convusing now, it's awful and I don't want to go back to the hospital if it's toxicity , otherwise it will be worse and worse because they 'll put him on drugs more and more again!!! Help us please! Carolyn ael's mum Carolyn - ael and the keto diet book Hi Carolyn, K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam, that is a LOT of benzodiazepine for a nearly 6 yr old to be on per day.... was 6 yrs old on that diaz dose at one point too (his was decreased from a massively ridiculous dose of 60 down to 30 mgs), and he continued to have toxicity induced seizures till we got him down to below 20 mgs, and that was without phenobarb (can be equally sedating) in the equation. A 5:1 ratio is way too high unless there is a specific reason they have used this - I see you have been advised on here to get Dr Freeman's book, and I second that. Your Drs need to be made aware that they are potentially aggravating his condition (ie -seizures!!) with 2 strong high dose meds in combination with a very high ratio. The book's actual title is 'The ketogenic Diet - A Treatment for Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'. Authors are Freeman (Hopkins hosp in USA), Freeman and Millicent . Basically to see if they have his diet in a ballpark range though, total calories for a 6 yr old are usually calculated at 65-68 cals per kg of bodyweight, including protein at 1.1 gm per kg. If possible, with meals spread fairly evenly over the day, and most find that a snack right before bedtime helps keep ketones up overnight. If he is under or overweight for his height though, the total calorie figure will probably be amended to aim towards his ideal weight, and the ratio should then be adjusted accordingly. (for example - if aiming for a lower bodyweight, less calories will be allocated, meaning body fat will probably be burnt as the weight is lost, so a lower ratio would be required to prevent excess ketosis, with the opposite applying if weight gain is desired) Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or down depending on how easily they produce ketones and how their seizure control goes. Urine ketones on the diet usually range from 4-16, blood ketones (if you can puchase a blood ketone monitor) are more accurate however. With that high ratio I would suspect he has fairly large ketones, and if so, his blood gases (blood ph bicarb, base excess etc) should also be checked to make sure he has not gone into metabolic acidosis. Glucose levels should probaby be done regualarly too, as he is not getting very much in the way of carbohydrates. Can you persuade anyone there to phone or email Hopkins hospital and seek advice, which I believe would actually result in confirmation that he is probably toxic on a combination of a high ketogenic ratio and medications. Weakness and paleness (usually with dark circles round the eyes), increased seizures, unsteadiness, legarthy, slurred or slowed speech, with or without vomiting, were 's toxicity signs. " 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 6, 2004 Report Share Posted July 6, 2004 I agree with Ann - it certainly does sound like he is either in, or very close to, convulsive status. I understand your fears of further toxicity should you take him to hospital Carolyn, I really do. If you had been around on this list late last year you would have seen that my son was in a very precarious position himself here, where I too was loath to take him in for 'help'. It was a living hell getting him to the point he is at now, 7 weeks in hospital in Nov/Dec last yr, the majority of that in intensive care, a coma, close to death, and then finally an end to our nightmare came on Christmas Day. He is now back in school fulltime, has been since February, completely seizure free for 6 mths, and doing extremely well. However - I cannot compare the 2 cases, because I don't know your son's exact circumstances, diagnosis, I don't know his Drs, and I am not familiar with your hospital's procedures and protocols. All I can do is recount again that 's problems stemmed from toxicity from medication (benzodiazepines) in conjunction with high ketones (in his case resulting from recently adding a carnitine supplement). He was also acidotic intermittently from the excess acidity from the high ketones. Further drugs in hospital after his admission only made him worse. ACTH (steroids) was tried to break it, which hadn't worked after 10 days, so a decision was made to cold turkey his 3 yr benzo addiction in a last ditch hope that this was indeed his problem. He was put in a thiopentone coma the day the diazepam was stopped, but he remained in (tonic) status after coming out of the coma, with focal status added to complicate matters - either a withdrawal reaction to the abrupt diazepam wean, or an adverse reaction to the thiopentone. He continued to seize, had temporary blindness (again, a possible reaction to the thiopentone or from a bout of occipital status) and we were told he may only have 24-48 hrs to live. He slowly started to improve though once they stopped pumping him full of drugs, the ridiculous 2000 mg a day epilm/depakote infusion was stopped, then the remaining 1000 mg dose was halved to 500 mgs, and a short sharp low dose course of topomax was started, an experimental status 'breaker' that everyone considered was worth a shot. To this day we don't know if the diazepam withdrawal finally eeked out of his system, taking the long-standing toxicity away with it, whether halving the depakote worked, or whether the topomax did indeed 'cure' him. 5 days later, we saw his last seizure. To get to that point, especially the drug withdrawal, took hrs/days of arguing/pleading with our neuro, with intensive care Drs, complaints to hospital management, including demanding a 2nd opinion (an epileptologist was eventually flown to our hospital to consult), never ending research at home here in between trips to and fro the hospital, support from list members on this list as well as one other, heartache, and plain out desperation. ael needs regular blood testing and monitoring - if (urine?) ketones are showing consistent readings over the 1.6 level (I am assuming this equates to our 16, the highest reading on the test stix), if he is requiring oxygen that often, if the convulsive seizures are that regular, and if he is now vomiting as well, I think you have no choice but to seek professional help. It is no easy task fighting for treatment contrary to what Drs suggest, it takes a lot of strength that I know you will find within yourself. If you feel the medications and high diet ratio are endangering your son, you must take the step of demanding an urgent appt for someone to listen to you and at least explore your fears about what you think is happening to him. Ann is right, he may well need his ketosis breaking up (with apple juice or something sweet) to at least lower the potency of one of his treatments, ie - ketones, but again - you are working practically blind without definite diagnostic blood testing. You won't know how much his ketones need to come down by, if at all, so how much to give him etc without taking the risk of dropping him out of ketosis. With topomax in his mix he may be suffering metabolic acidosis, he needs blood gases done urgently. And how is he eating with all this going on? Is he at the point of needing a nasal gastric tube? Is he well hydrated? Do you have an oxygen monitor to kow exactly how low his stats are dropping to? Without knowing all the details, and assuming he is too ketotic and possibly toxic, he probably needs his ratio lowering, calorie allotment checked and possibly given via NG tube to make sure he is keeping all required calories down (including fluids), a reduction on the clonazepam and everything else kept as stable as possible. All with the guidance of a Dr who is prepared to listen to you, one who has sought an outside opinion from an experienced keto centre, and preferably all within the (relative) safety of a hospital setting where he can be monitored and have regular blood ketone, glucose, and blood gases checks. At this point, probably regular elctrolytes too - his body will no doubt be in a very stressed state at this point, and a lot more things may be out of kilter than are actually visible, without blood testing. ----- Original Message ----- Hi Carolyn, Will your neurologist not listen to you? It seems like ael is definitely aggravated by benzodiazepines. This is a common trait with intractable epilepsy cases. It does seem that he needs urgent care, possibly an infusion to break the convulsive status. There are other drugs that can be used in intensive care. The ketones are likely too high and he may be acidotic. Can you give a little juice and see if that helps with the nausea and vomiting? Ann Shepard -----Original Message----- From: caronath Suzan, I really don't know what to do but aël is very bad, he's got seizure every 10 mn it's like if he'll be asphyxied! I put oxygen at each time, it's getting worse and worse... I've just check ketones with the ketostix it shows taht he's on high ketones over 1.6 but it isn't more precise... He vomits once today... He's convusing now, it's awful and I don't want to go back to the hospital if it's toxicity , otherwise it will be worse and worse because they 'll put him on drugs more and more again!!! Help us please! Carolyn ael's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Carolyn Sorry to hear ael is having such a difficult time at the moment. What meds is he on? In April my daughter was having severe seizures every 20 minutes while she slept and it turned out that the benzodiazapine drugs were the main culprit. We had to cease those, and find another drug to stop the seizures. Luckily, a small amount of Trileptal (225mg) did the trick. As reluctant as I was, we ended up in hospital for a week to sort this out. I figured we were in the best place to deal with an emergency if her situation became worse. In April I held grave concerns for Claire. Her seizures were frequent and severe, the benzos stopped her functioning to the stage where she couldn't even eat and I thought I would have to cease the diet. Luckily, however, we hit on something that worked and she is now the best she has ever been! I hope you find your miracle to turn things around for iel soon. Jill At 01:01 AM 7/07/2004, you wrote: > Suzan, > > I really don't know what to do but aël is very bad, he's got > seizure every 10 mn it's like if he'll be asphyxied! I put oxygen at each > time, it's getting worse and worse... > I've just check ketones with the ketostix it shows taht he's on high > ketones over 1.6 but it isn't more precise... > He vomits once today... > He's convusing now, it's awful and I don't want to go back to the > hospital if it's toxicity , otherwise it will be worse and worse because > they 'll put him on drugs more and more again!!! > Help us please! > > Carolyn ael's mum > > > Carolyn - ael and the keto diet book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be on per > day.... was 6 yrs old on that diaz dose at one point too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him down to > below 20 > mgs, and that was without phenobarb (can be equally sedating) > in the > equation. > A 5:1 ratio is way too high unless there is a specific reason > they > have > used this - I see you have been advised on here to get Dr Freeman's > book, > and I second that. Your Drs need to be made aware that they are > potentially > aggravating his condition (ie -seizures!!) with 2 strong high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, with > meals > spread fairly evenly over the day, and most find that a snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if aiming > for a > lower bodyweight, less calories will be allocated, meaning body fat > will > probably be burnt as the weight is lost, so a lower ratio would be > required > to prevent excess ketosis, with the opposite applying if weight > gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 ratio, > moving > up or > down depending on how easily they produce ketones and how their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate however. With > that > high ratio I would suspect he has fairly large ketones, and if > so, his > blood > gases (blood ph bicarb, base excess etc) should also be checked to > make sure > he has not gone into metabolic acidosis. Glucose levels should > probaby > be > done regualarly too, as he is not getting very much in the way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in confirmation > that he > is > probably toxic on a combination of a high ketogenic ratio and > medications. > Weakness and paleness (usually with dark circles round the eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 7, 2004 Report Share Posted July 7, 2004 , I think it's getting worse and worse with drugs, I'll try to stay quiete and we'll see, it can't be worse anyway, aël has 30 big seizures a day...never like that. Poitiers is a bit far from Toulouse where we live... Thank you. Carolyn, aël's mum Re: Carolyn - ael Carolyn I forgot to mention the other prescription we have on hand if the rectal valium does not work is oral ativan at 1mg. Stella is 5 so I'm not sure what ael's does would be. I think we are using the same rectal valium the name might be different in France. Are you close to Poitier? I think that is how you spell it, we have some friends vacationing over there for the summer, if you needed anything from over here I could have it sent with them. I hope things get better soon for you. -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. " 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 7, 2004 Report Share Posted July 7, 2004 Suzan, aël is still very bad but as I already said I don't want to go back to hospital it's so worse for him, we've just spent nearly 2 months in hospital these 3 last months and nothing better... They don't know at all about keto diet... I decrease drugs bit by bit I don't know what else I could do to help my angel. I've just received the blod monitor for ketones, Nath is on 2.1 mmol/l...tell me how to interprete it, thank you. Nath is very very constipated even before the diet but it's getting worse...have you some solution? Hospital here don't even know Hopkins hospital neither none in england...so I have to manage myself but Nath is so bad that I can't go anywhere with him...he's too weak. Carolyn, aël's mum nearly 6 unknown disease, disabled and epileptic+++ Re: Carolyn - ael Carolyn, I really think your Drs need to know how bad things currently are seizure wise, and to be educated (by you if need be) on the dangers of med toxicity with a high keto ratio at the same time. Your question re things being worse with the diet if too much or not enough ketosis - well from a toxicity point of view - too much ketosis is defintely going to aggravate toxicity, (and therefore seizures) whereas low ketones will not be as impacting on the med effects. Too little ketosis however means he may not be getting sufficient ketone protection for his seizures fullstop. Hence the need to find out exactly where his blood ketones are at and whether things need adjusting. At a 5:1 ratio, my pick would be that his ketones are going far too high, and you probably need some lab tests to check this. Sooner rather than later. You also need to have blood gases checked to make sure he is not in metabolic acidosis. If his ketones are too high, this is a real possibility and can be dangerous. It is just too irresponsible of the hospital to place him on a medical diet without checking all these things, especially so soon after diet intiation, and especially when his seizures have worsened rather than improved. I think you are on the right track to look at decreasing medications, but as to which one...If he is acidotic, the topomax may be aggravating this (induces acidity), if he is on too much benzodiazepine medication, then it may be this one that needs targeting. But you need those blood results before you can make an informed decision, and for this reason, I personally would have him back in hospital for safety reasons, and to enable all these checks to be done. Do you have someone who can be an advocate on your behalf and demand that the hospital seek outside help - from an institution like Hopkins hospital in the USA, or any of the major keto centres. Time taken to see an improvement on the diet varies absolutely on an individual basis. For some it is literally overnight, for others it can take months of finetuning and sleuthing out potential problems (like med weaning, ratio, calories etc). Re the emergency medications, diastat is rectal valium, and ativan is another benzodiazepine, shorter half life but more impacting. The trouble is...if he is already toxic on this class of med, adding more will probably not help, it could in fact make him worse.And if too much is used, he will quickly become addicted to the emergency med as well - adding to the overall toxicity problem that I think he is facing. In a nutshell - yes, the hospital can do something else - they can undo the mess that it seems to me they have got him into. If that means they pick up a phone and seek outside help, then so be it. Are you recording all his seizure times, mealtimes, med times etc? If so, have you noticed any definite patterns - like times he is always more stable in the day, or times where he worsens? I really don't think by the sounds of things that you can afford to wait too much longer for either the keto diet book, or the glucometer/bhb monitor to arrive. These are things the hospital can test in the meantime, as well as the other tests I mentioned above. The information contained in the book can be easily accessed by physicians - by contacting the author direct if neccessary. This is all possible and there is no reason it should not be done. I really don't know what else to tell you right now, or what else to suggest, other than to stress that this is the hospital's responsibility. The burden you are carrying is simply too much, you need help, from someone over there who is able to carry out all the testing and diet adjustments that he seems in my opinion to need. ----- Original Message ----- Hello, My son has seizures non stop last night, itwas awful and I really don't know what to do. I haven't the book yet, I'm waiting for it to find advices.... Yesterday I've decided to decrease topiramate because he's really bad... I ordered the monitor for glycemia and ketosis...Do you think it could be worse with the diet if it's too much ketosis or not enough? After how many days we can see an improvement with the diet? I'm scared of these seizures and the hospital can't do anything else so I stay home with aël ... 9If you got some ideas or suggestions help us please, thank you Carolyn, aël's mum nearly 6 " 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 9, 2004 Report Share Posted July 9, 2004 But were those previous 2 mths in hospital when he was already on the diet though Carolyn? If not, then this time you would have something positive to work towards, hopefully the diet kicking in once his med levels fall below toxic enough levels to allow it to do so. IF you can convince them of that being a potential problem that is, and this is something you will have to attempt again and again until you find someone who will not immediately pump him full of more and more drugs... Our keto dietician is actually in France at the moment, but I have no idea which region, or which hospital she is at as part of her visit there. I wish I could find out and see if it was in your vicinity, but unfortunately I don't think I would be given out that information. Constipation was a major issue for in his early diet days, and I think you will find that the high dose benzodiazepines are also playing a part there. These medications depress the whole central nervous system, and bladder/bowel function is no exception.... Magnesium was 's eventual solution - he has calcium/magnesium capsules each day in a one to one ratio - ie - same amount of magnesium as calcium contained in each capsule. ael may require fleet suppositries (glycerin) or an enema first though if he has got severely constipated, to get him back on track first. Constipation, especially if he is impacted, can induce/aggravate seizures, and this is something that has to be sorted out fairly quickly. Toxicity can also build if the bowels are not being emptied, metabolites from meds usually excreted in bowel motions can cause a 'build up' and this can have like a poisoning effect. Re the blood ketone readings you have....something is not adding up there - with 16 + (or darkest reading on urine test strips) a blood reading of 2.1 mmol seems very low. I would expect to see at least a reading of 4.0 with those sort of urine ketones, and for at least, 3.0 is probably what he needs fairly continuously to attain and maintain seizure control. The strips can be a bit dicey - if a reading comes back as a bit out the ordinary, we always do a second test to make sure it registered correctly, expensive though this procedure can be... We aim for 3.5 - 4.5 blood ketone readings, (though 4.5 as a capillary fingerprick sample is heading up a bit on the high side for him) and approx the same range with glucose. If you do repeat tests and see a pattern where he really does have blood ketones regularly that low, then on a high 5:1 ratio, I would be at a bit of a loss as to what to suggest next. It may mean he is on too many calories, but if he is having very frequent seizures, I would doubt he is getting all of his calorie allowance in? Or perhaps because he is not doing well seizure wise, he is not burning off the calories that he is getting. ----- Original Message ----- Suzan, aël is still very bad but as I already said I don't want to go back to hospital it's so worse for him, we've just spent nearly 2 months in hospital these 3 last months and nothing better... They don't know at all about keto diet... I decrease drugs bit by bit I don't know what else I could do to help my angel. I've just received the blod monitor for ketones, Nath is on 2.1 mmol/l...tell me how to interprete it, thank you. Nath is very very constipated even before the diet but it's getting worse...have you some solution? Hospital here don't even know Hopkins hospital neither none in england...so I have to manage myself but Nath is so bad that I can't go anywhere with him...he's too weak. Carolyn, aël's mum nearly 6 unknown disease, disabled and epileptic+++ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Carolyn - ael and the keto diet book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be on per > day.... was 6 yrs old on that diaz dose at one point too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him down to > below 20 > mgs, and that was without phenobarb (can be equally sedating) > in the > equation. > A 5:1 ratio is way too high unless there is a specific reason > they > have > used this - I see you have been advised on here to get Dr Freeman's > book, > and I second that. Your Drs need to be made aware that they are > potentially > aggravating his condition (ie -seizures!!) with 2 strong high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, with > meals > spread fairly evenly over the day, and most find that a snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if aiming > for a > lower bodyweight, less calories will be allocated, meaning body fat > will > probably be burnt as the weight is lost, so a lower ratio would be > required > to prevent excess ketosis, with the opposite applying if weight > gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 ratio, > moving > up or > down depending on how easily they produce ketones and how their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate however. With > that > high ratio I would suspect he has fairly large ketones, and if > so, his > blood > gases (blood ph bicarb, base excess etc) should also be checked to > make sure > he has not gone into metabolic acidosis. Glucose levels should > probaby > be > done regualarly too, as he is not getting very much in the way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in confirmation > that he > is > probably toxic on a combination of a high ketogenic ratio and > medications. > Weakness and paleness (usually with dark circles round the eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 18, 2004 Report Share Posted July 18, 2004 Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Carolyn - ael and the keto diet book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be on per > day.... was 6 yrs old on that diaz dose at one point too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him down to > below 20 > mgs, and that was without phenobarb (can be equally sedating) > in the > equation. > A 5:1 ratio is way too high unless there is a specific reason > they > have > used this - I see you have been advised on here to get Dr Freeman's > book, > and I second that. Your Drs need to be made aware that they are > potentially > aggravating his condition (ie -seizures!!) with 2 strong high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, with > meals > spread fairly evenly over the day, and most find that a snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if aiming > for a > lower bodyweight, less calories will be allocated, meaning body fat > will > probably be burnt as the weight is lost, so a lower ratio would be > required > to prevent excess ketosis, with the opposite applying if weight > gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 ratio, > moving > up or > down depending on how easily they produce ketones and how their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate however. With > that > high ratio I would suspect he has fairly large ketones, and if > so, his > blood > gases (blood ph bicarb, base excess etc) should also be checked to > make sure > he has not gone into metabolic acidosis. Glucose levels should > probaby > be > done regualarly too, as he is not getting very much in the way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in confirmation > that he > is > probably toxic on a combination of a high ketogenic ratio and > medications. > Weakness and paleness (usually with dark circles round the eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 18, 2004 Report Share Posted July 18, 2004 Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Carolyn - ael and the keto diet book > > > Hi Carolyn, > K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs > diazepam, > that is a LOT of benzodiazepine for a nearly 6 yr old to be on per > day.... was 6 yrs old on that diaz dose at one point too (his > was > decreased from a massively ridiculous dose of 60 down to 30 > mgs), and > he > continued to have toxicity induced seizures till we got him down to > below 20 > mgs, and that was without phenobarb (can be equally sedating) > in the > equation. > A 5:1 ratio is way too high unless there is a specific reason > they > have > used this - I see you have been advised on here to get Dr Freeman's > book, > and I second that. Your Drs need to be made aware that they are > potentially > aggravating his condition (ie -seizures!!) with 2 strong high dose > meds in > combination with a very high ratio. > The book's actual title is 'The ketogenic Diet - A Treatment for > Epilepsy'. I have the 3rd edition here, published in 2000by > 'Demos'. > Authors are Freeman (Hopkins hosp in USA), > Freeman and > Millicent . > > Basically to see if they have his diet in a ballpark range > though, > total > calories for a 6 yr old are usually calculated at 65-68 cals > per kg of > bodyweight, including protein at 1.1 gm per kg. If possible, with > meals > spread fairly evenly over the day, and most find that a snack right > before > bedtime helps keep ketones up overnight. > If he is under or overweight for his height though, the total > calorie > figure will probably be amended to aim towards his ideal > weight, and > the > ratio should then be adjusted accordingly. (for example - if aiming > for a > lower bodyweight, less calories will be allocated, meaning body fat > will > probably be burnt as the weight is lost, so a lower ratio would be > required > to prevent excess ketosis, with the opposite applying if weight > gain > is > desired) > Most kiddies are started out on between a 3.1 or 4:1 ratio, > moving > up or > down depending on how easily they produce ketones and how their > seizure > control goes. > Urine ketones on the diet usually range from 4-16, blood > ketones (if > you > can puchase a blood ketone monitor) are more accurate however. With > that > high ratio I would suspect he has fairly large ketones, and if > so, his > blood > gases (blood ph bicarb, base excess etc) should also be checked to > make sure > he has not gone into metabolic acidosis. Glucose levels should > probaby > be > done regualarly too, as he is not getting very much in the way of > carbohydrates. > Can you persuade anyone there to phone or email Hopkins > hospital and > seek > advice, which I believe would actually result in confirmation > that he > is > probably toxic on a combination of a high ketogenic ratio and > medications. > Weakness and paleness (usually with dark circles round the eyes), > increased > seizures, unsteadiness, legarthy, slurred or slowed speech, with or > without > vomiting, were 's toxicity signs. > > > > > > > > > > > " 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 18, 2004 Report Share Posted July 18, 2004 Carolyn, I want to encourage you that you can do this. We started the diet in the Philippines. After starting it we realized that the doctors and nurses knew very little. With the help of this group we made many changes, conformed the diet to how they were doing it in the U.S., weaned the meds, created our own menus on the Stanford meal planner etc. We used the doctor for lab work. Over 2 years later on the diet we attribute our success to this group. Rhonda (mom to Shan, age 9) - ael Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Carolyn, I want to encourage you that you can do this. We started the diet in the Philippines. After starting it we realized that the doctors and nurses knew very little. With the help of this group we made many changes, conformed the diet to how they were doing it in the U.S., weaned the meds, created our own menus on the Stanford meal planner etc. We used the doctor for lab work. Over 2 years later on the diet we attribute our success to this group. Rhonda (mom to Shan, age 9) - ael Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Quote Link to comment Share on other sites More sharing options...
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