Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 We have only had experience with tegretol, but slower was the only way. Dr. Freeman's book also mentions the probable withdrawal seizures. With the diet, the drugs seem to work differently and the patient responds differently. Hair thinning can be a result of insufficient vitamins and minerals on the diet. It was with us. Bill B Eckert wrote: > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Barbara, Hi. Hang in there the diet sounds to me like it needs fine tuning. We were told by a pediatrician in the ER that depakote did not need to be weaned off. It was the only AED that this is the case. We stopped depakote that night after months of terrible seizures with Topamax and Depakote. Lamictal, from what I understand must be weaned off really, really slowly. Whatare your daughters ketones in the morning? They may be small and she may need a late night snack to make ketones through the night. Also make sure her specific gravity is not too low (she must be slightly dehydrated). Try to keep her ketones between 80 and 160 at all times. It may be expensive to buy the multistix and check each urine. But to me it is worth it. I do do do hope it works for her. We are on week 8 and are so very hopeful. We needed one fine tuning for low ketones in the morning and added a very late snack. It has worked so far. Oh, by the way our epileptologist never told us about the meds or the diet. We were always told to increase the meds everytime our son had a seizure. We found out about the diet by accident and after a year+, insisted ( " we " ) my son go on it. He is 20 months old and he is coming back to us!!!!!!! It feels good to tell someone about him who would understand. Sorry so long. Peace........Laurie > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Barbara, Hi. Hang in there the diet sounds to me like it needs fine tuning. We were told by a pediatrician in the ER that depakote did not need to be weaned off. It was the only AED that this is the case. We stopped depakote that night after months of terrible seizures with Topamax and Depakote. Lamictal, from what I understand must be weaned off really, really slowly. Whatare your daughters ketones in the morning? They may be small and she may need a late night snack to make ketones through the night. Also make sure her specific gravity is not too low (she must be slightly dehydrated). Try to keep her ketones between 80 and 160 at all times. It may be expensive to buy the multistix and check each urine. But to me it is worth it. I do do do hope it works for her. We are on week 8 and are so very hopeful. We needed one fine tuning for low ketones in the morning and added a very late snack. It has worked so far. Oh, by the way our epileptologist never told us about the meds or the diet. We were always told to increase the meds everytime our son had a seizure. We found out about the diet by accident and after a year+, insisted ( " we " ) my son go on it. He is 20 months old and he is coming back to us!!!!!!! It feels good to tell someone about him who would understand. Sorry so long. Peace........Laurie > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Sounds great Barbara, so nice to see that things are on the improve. Before everything hit the fan with in Feb due to his calorie insufficiency, this is pretty well where he was too - daytime seizures controlled, but still lingering early am sleep ones. Half a capsule (so about 63 mgs at a time?) every 8 days doesn't actually sound that slow to me. I personally don't think I would go any quicker then that. In fact - we have found that the lower down the dose we go, it pays to switch to decremental weaning, ie - the same percentage off the remaining dose each time, because this amount may not have been a problem at the higher doses, but it is now becoming a biggish chunk to take out each time. With depakote, we got away with big reductions once a week in the beginning, but when we got lower down (to about 400 mgs) we started seeing the reduction fallout lasting a bit longer, about 12-14 days. So we kept to 2 weekly reductions from that point on to make sure that there were no periods of 'withdrawal on top of withdrawal'. The early am sleep ones may actually still be withdrawal related, it may be that her overall control is better from the diet with less meds on board, and she is only showing sings of withdrawal in the most vulnerable time of the day now - ie - in sleep, and when ketones are probably at their lowest point. You will hopefully find that these too phase out once the weans are complete. But yes, they could just as easily be from actually being on the med still fullstop, again - appearing at this risky time of night/morning. Either way - I would not rock the boat, I would stick to slow (ish) and steady, because if she is one that has a hard time towards to the end, putting it back up as a result, and having to redo the rest of the wean a slower rate will see you a lot further behind any weaning schedule you have at present. The hair issue - same here ( lost his thick curls about a yr ago) - as Bill says, could be from any number of mineral/vitamin deficiencies, but it is also a common theme with kids on both the diet and depakote. As long as you are on the right track with reducing the depakote, hopefully that will sort itelf out, along with the tiredness, moody spells etc. Re the early am TCs again - do you see any pattern relating to ketones or blood sugar? We have always had a hard time getting Danel up near to '8' on urine ketone stix on awakening, but since increasing cals during the day, those early am ones have for the most part gone as long as he has that '8' reading, and isn't having any med changes. Seems to be the magic number that he needs to stop them for whatever reason they are occurring - be it from meds, high glucose, whatever. Reductions though, I am not sure about, as I haven't done any sice the last round of calorie increases. Maybe the '8' will carry him through, maybe it won't - time will tell when we can start our weaning again once this glucose issue is resolved. The lamictal, as it is a small dose, is probably unlikely to have any tandem type of reduction reaction, so I would leave it until the depakote wean is all done if possible, so that you don't change too much at once. If it were at a higher dose though, I'd say maybe you need to tweak a bit of that in between, based on what you saw in as each lamictal dose peaked. Having said ALL of that - some kids sail through quickish weans of meds once they have the diet on track to give good protection against seizures, so it really is a matter of whether you want to take a chance and speed her 'recovery' from ditching the meds sooner rather than later. I am maybe a bit biased towards slow and sure due to the many struggles with meds and the diet has had in the past 2 yrs, so what I say might be a bit on the over-cautious side ----- Original Message ----- > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Sounds great Barbara, so nice to see that things are on the improve. Before everything hit the fan with in Feb due to his calorie insufficiency, this is pretty well where he was too - daytime seizures controlled, but still lingering early am sleep ones. Half a capsule (so about 63 mgs at a time?) every 8 days doesn't actually sound that slow to me. I personally don't think I would go any quicker then that. In fact - we have found that the lower down the dose we go, it pays to switch to decremental weaning, ie - the same percentage off the remaining dose each time, because this amount may not have been a problem at the higher doses, but it is now becoming a biggish chunk to take out each time. With depakote, we got away with big reductions once a week in the beginning, but when we got lower down (to about 400 mgs) we started seeing the reduction fallout lasting a bit longer, about 12-14 days. So we kept to 2 weekly reductions from that point on to make sure that there were no periods of 'withdrawal on top of withdrawal'. The early am sleep ones may actually still be withdrawal related, it may be that her overall control is better from the diet with less meds on board, and she is only showing sings of withdrawal in the most vulnerable time of the day now - ie - in sleep, and when ketones are probably at their lowest point. You will hopefully find that these too phase out once the weans are complete. But yes, they could just as easily be from actually being on the med still fullstop, again - appearing at this risky time of night/morning. Either way - I would not rock the boat, I would stick to slow (ish) and steady, because if she is one that has a hard time towards to the end, putting it back up as a result, and having to redo the rest of the wean a slower rate will see you a lot further behind any weaning schedule you have at present. The hair issue - same here ( lost his thick curls about a yr ago) - as Bill says, could be from any number of mineral/vitamin deficiencies, but it is also a common theme with kids on both the diet and depakote. As long as you are on the right track with reducing the depakote, hopefully that will sort itelf out, along with the tiredness, moody spells etc. Re the early am TCs again - do you see any pattern relating to ketones or blood sugar? We have always had a hard time getting Danel up near to '8' on urine ketone stix on awakening, but since increasing cals during the day, those early am ones have for the most part gone as long as he has that '8' reading, and isn't having any med changes. Seems to be the magic number that he needs to stop them for whatever reason they are occurring - be it from meds, high glucose, whatever. Reductions though, I am not sure about, as I haven't done any sice the last round of calorie increases. Maybe the '8' will carry him through, maybe it won't - time will tell when we can start our weaning again once this glucose issue is resolved. The lamictal, as it is a small dose, is probably unlikely to have any tandem type of reduction reaction, so I would leave it until the depakote wean is all done if possible, so that you don't change too much at once. If it were at a higher dose though, I'd say maybe you need to tweak a bit of that in between, based on what you saw in as each lamictal dose peaked. Having said ALL of that - some kids sail through quickish weans of meds once they have the diet on track to give good protection against seizures, so it really is a matter of whether you want to take a chance and speed her 'recovery' from ditching the meds sooner rather than later. I am maybe a bit biased towards slow and sure due to the many struggles with meds and the diet has had in the past 2 yrs, so what I say might be a bit on the over-cautious side ----- Original Message ----- > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Sounds great Barbara, so nice to see that things are on the improve. Before everything hit the fan with in Feb due to his calorie insufficiency, this is pretty well where he was too - daytime seizures controlled, but still lingering early am sleep ones. Half a capsule (so about 63 mgs at a time?) every 8 days doesn't actually sound that slow to me. I personally don't think I would go any quicker then that. In fact - we have found that the lower down the dose we go, it pays to switch to decremental weaning, ie - the same percentage off the remaining dose each time, because this amount may not have been a problem at the higher doses, but it is now becoming a biggish chunk to take out each time. With depakote, we got away with big reductions once a week in the beginning, but when we got lower down (to about 400 mgs) we started seeing the reduction fallout lasting a bit longer, about 12-14 days. So we kept to 2 weekly reductions from that point on to make sure that there were no periods of 'withdrawal on top of withdrawal'. The early am sleep ones may actually still be withdrawal related, it may be that her overall control is better from the diet with less meds on board, and she is only showing sings of withdrawal in the most vulnerable time of the day now - ie - in sleep, and when ketones are probably at their lowest point. You will hopefully find that these too phase out once the weans are complete. But yes, they could just as easily be from actually being on the med still fullstop, again - appearing at this risky time of night/morning. Either way - I would not rock the boat, I would stick to slow (ish) and steady, because if she is one that has a hard time towards to the end, putting it back up as a result, and having to redo the rest of the wean a slower rate will see you a lot further behind any weaning schedule you have at present. The hair issue - same here ( lost his thick curls about a yr ago) - as Bill says, could be from any number of mineral/vitamin deficiencies, but it is also a common theme with kids on both the diet and depakote. As long as you are on the right track with reducing the depakote, hopefully that will sort itelf out, along with the tiredness, moody spells etc. Re the early am TCs again - do you see any pattern relating to ketones or blood sugar? We have always had a hard time getting Danel up near to '8' on urine ketone stix on awakening, but since increasing cals during the day, those early am ones have for the most part gone as long as he has that '8' reading, and isn't having any med changes. Seems to be the magic number that he needs to stop them for whatever reason they are occurring - be it from meds, high glucose, whatever. Reductions though, I am not sure about, as I haven't done any sice the last round of calorie increases. Maybe the '8' will carry him through, maybe it won't - time will tell when we can start our weaning again once this glucose issue is resolved. The lamictal, as it is a small dose, is probably unlikely to have any tandem type of reduction reaction, so I would leave it until the depakote wean is all done if possible, so that you don't change too much at once. If it were at a higher dose though, I'd say maybe you need to tweak a bit of that in between, based on what you saw in as each lamictal dose peaked. Having said ALL of that - some kids sail through quickish weans of meds once they have the diet on track to give good protection against seizures, so it really is a matter of whether you want to take a chance and speed her 'recovery' from ditching the meds sooner rather than later. I am maybe a bit biased towards slow and sure due to the many struggles with meds and the diet has had in the past 2 yrs, so what I say might be a bit on the over-cautious side ----- Original Message ----- > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Barbara, By the way, I've read that one should change (reduce) one med at a time, unless one is in the clinically controlled setting (hopsital). If one reduces more than one at a time one will not know which reduction is causing " rebound withdrawl " seizures. Good luck, ketogenically yours, Pete > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Barbara, By the way, I've read that one should change (reduce) one med at a time, unless one is in the clinically controlled setting (hopsital). If one reduces more than one at a time one will not know which reduction is causing " rebound withdrawl " seizures. Good luck, ketogenically yours, Pete > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Barbara, By the way, I've read that one should change (reduce) one med at a time, unless one is in the clinically controlled setting (hopsital). If one reduces more than one at a time one will not know which reduction is causing " rebound withdrawl " seizures. Good luck, ketogenically yours, Pete > Hi, > Need some advice from the experts here, please. > > I've been weaning my daughter from depakote since starting the diet on > 7/21/03. (We got rid of Zonegran first-saw immediate improvement in > appetite, but still many -any different- seizures. She also came down > with both strep and a sinus infection, too, that messed things up for > awhile). Anyway, we're down from 7- 125 mg capsules/day to 3-1/2 > capsules. Needless to say, I'm doing this on my own. The neuro knows > about the first few reductions, but wanted me to up the lamictal (5 mg, > 2x/day) if I went any farther. I have no intention of increasing any > drugs at this point. > > I have been going super slow after an episode in June (our nightmare > just began last April) when we weaned from 625 mg/day over a 4 week > period, anticipating starting lamictal (I did not want to give both). > After some improvement, the seizures got very much worse and, of course, > we went back up on the depakote---my option was go faster with the > lamictal. Things stabilized a bit for awhile, but now I know this was > probably a withdrawal situation (which was not mentioned, of > course----why do the neuros concede that stopping cold turkey can be > life-threatening (uh, withdrawal, right?), but will not admit there can > be withdrawal seizures during the weaning???). > Anyway, that's why I've been going at a rate of 1/2 capsule every 8 days. > > The good news--which I give with cautious optimism (had my heart broken > a too many times in the last few months and I'm praying that this is not > just a good cycle we're going through): has had only early am > tonic-clonic sleep seizures for the last 13 days!!!! There have been 7 > total on 7 mornings, from 30 to 50 seconds. They are intense, but at > least she is unaware and during the day my little girl has come back!!! > Even if it's not the diet working (oh please, oh please, let it be) and > it is only a good cycle, the change in her after reducing the drugs is > fantastic--she is almost herself again (still a little moody and tires > easily). The drugs have never brought control, anyway, so I plan to > continue the wean. > > My question--should I continue at this super slow pace and not rock the > boat?. Or should I go a little faster on the chance that the sleep > seizures (and moodiness/lack of energy) might be due to the depakote? > And then, when and how fast with the lamictal? I should add that I've > noticed her hair is starting to thin, most likely from the depakote. > > Thanks, > ~Barbara > p.s. Sorry this got so long. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Thanks to everyone for your input. Tonight I'm even more unsure of how to continue. For the last 2 weeks, 's only been having 1 early am tonic-clonic sleep seizure (not every day-there were 7 in 12 days). Last night she had 1 at 3am and another around 3:30 am. Tonight, about 30 min. after she fell asleep, she had either a very big myoclonic or short tonic-clonic. Don't know what to expect to the rest of the night. And definitely don't know what to do about further reductions. At the current rate, I was set to go down another 1/2 capsule on Thursday. Any ideas? BTW her ketones were a very strong 160 at 7:45pm. and she gets 4 meals, the last one at around 8:45pm. I don't always get at first morning ketone reading because she hasn't been going to the potty until much later in the am (they've been at least 80 lately, and usu. 80-160). Her blood sugar was 64 around 4 or 5 am on two mornings that she had no seizures (I haven't been taking it every am as I usu. end up waking her-need more practice). It was 74 right after one seizure and the other day at 4am it was 108 (maybe a bad reading?), then 74 at 8am, then she had a seizure at 9am (asleep). Children's in Pittsburgh doesn't use glucose monitoring--today the dietitian said those were all normal readings. I said-even for a ketokid? She didn't really have an answer. We have our next follow-up with the neuro on Friday. Dietitian said she'll probably want to raise the ratio and/of adjust med's ---of course, we know the med adjustment will be a given, esp. when they learn I've been weaning it. Soooo help!!! Thanks, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Thanks to everyone for your input. Tonight I'm even more unsure of how to continue. For the last 2 weeks, 's only been having 1 early am tonic-clonic sleep seizure (not every day-there were 7 in 12 days). Last night she had 1 at 3am and another around 3:30 am. Tonight, about 30 min. after she fell asleep, she had either a very big myoclonic or short tonic-clonic. Don't know what to expect to the rest of the night. And definitely don't know what to do about further reductions. At the current rate, I was set to go down another 1/2 capsule on Thursday. Any ideas? BTW her ketones were a very strong 160 at 7:45pm. and she gets 4 meals, the last one at around 8:45pm. I don't always get at first morning ketone reading because she hasn't been going to the potty until much later in the am (they've been at least 80 lately, and usu. 80-160). Her blood sugar was 64 around 4 or 5 am on two mornings that she had no seizures (I haven't been taking it every am as I usu. end up waking her-need more practice). It was 74 right after one seizure and the other day at 4am it was 108 (maybe a bad reading?), then 74 at 8am, then she had a seizure at 9am (asleep). Children's in Pittsburgh doesn't use glucose monitoring--today the dietitian said those were all normal readings. I said-even for a ketokid? She didn't really have an answer. We have our next follow-up with the neuro on Friday. Dietitian said she'll probably want to raise the ratio and/of adjust med's ---of course, we know the med adjustment will be a given, esp. when they learn I've been weaning it. Soooo help!!! Thanks, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Barbara - I think you may possibly be seeing some signs of the weekly depakote reductions accumulating, and I would perhaps hold off on weaning for a while till you see these start to improve. If her ketones are going too high you may have to do a ratio decrease as well. Reducing the depakote can strengthen the overall diet effect, as a lot of papers say they kind of 'compete' with each other metabolically. The glucose readings can be a bit hard to pick when after a seizure, but you may also be seeing some signs of her metabolism possibly speeding up after the depakote dose has been getting down lower. Depakote has weight gain as a potential side effect, being a CNS depressant, it does affect metabolism, and I think one of the reasons so many kids seem to do so much better after meds are weaned - the alterations of doses, either up or down can affect what happens calorie wise. You know now she is capable of having some good control from the diet, and it looks like she will do well, esp once the depakote has gone, but I definitely think you may have to wait now and see if she stabilises. As I said earlier, it took about 12-14 days after each dep reduction once the 'toxic top' had been taken off the higher doses to come right again, and this seems to be quite common with a lot of others here. I hope her night wasn't too bad - about to go and keep vigil over now - so I know the feeling..... ----- Original Message ----- > Thanks to everyone for your input. > > Tonight I'm even more unsure of how to continue. For the last 2 weeks, > 's only been having 1 early am tonic-clonic sleep seizure (not > every day-there were 7 in 12 days). Last night she had 1 at 3am and > another around 3:30 am. Tonight, about 30 min. after she fell asleep, > she had either a very big myoclonic or short tonic-clonic. Don't know > what to expect to the rest of the night. And definitely don't know what > to do about further reductions. At the current rate, I was set to go > down another 1/2 capsule on Thursday. Any ideas? > > BTW her ketones were a very strong 160 at 7:45pm. and she gets 4 meals, > the last one at around 8:45pm. I don't always get at first morning > ketone reading because she hasn't been going to the potty until much > later in the am (they've been at least 80 lately, and usu. 80-160). Her > blood sugar was 64 around 4 or 5 am on two mornings that she had no > seizures (I haven't been taking it every am as I usu. end up waking > her-need more practice). It was 74 right after one seizure and the other > day at 4am it was 108 (maybe a bad reading?), then 74 at 8am, then she > had a seizure at 9am (asleep). Children's in Pittsburgh doesn't use > glucose monitoring--today the dietitian said those were all normal > readings. I said-even for a ketokid? She didn't really have an answer. > > We have our next follow-up with the neuro on Friday. Dietitian said > she'll probably want to raise the ratio and/of adjust med's ---of > course, we know the med adjustment will be a given, esp. when they learn > I've been weaning it. Soooo help!!! > > Thanks, > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Babra, I've not read the other posts re. this heading. However I noticed that 's ketones were high. This was our experience too, and we had to reduce Rohan's ratio during the dep wean. We did it gradually along with the drops in dose. All the withdrawals in the latter half of the wean were sleep ones. Once we'd completed the wean the sz pattern changed. We also had to increase the ratio again. Best of luck. Saro...........Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Babra, I've not read the other posts re. this heading. However I noticed that 's ketones were high. This was our experience too, and we had to reduce Rohan's ratio during the dep wean. We did it gradually along with the drops in dose. All the withdrawals in the latter half of the wean were sleep ones. Once we'd completed the wean the sz pattern changed. We also had to increase the ratio again. Best of luck. Saro...........Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Babra, I've not read the other posts re. this heading. However I noticed that 's ketones were high. This was our experience too, and we had to reduce Rohan's ratio during the dep wean. We did it gradually along with the drops in dose. All the withdrawals in the latter half of the wean were sleep ones. Once we'd completed the wean the sz pattern changed. We also had to increase the ratio again. Best of luck. Saro...........Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Most neurologists don't know squat about the diet! Bill > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi , We are in the midst of withdrawal from a rapid depakote wean in hospital, not a pleasant experience, but no regrets - er yet anyway. It has taken about 7 days after the last dose (weaned in 3 stages over 7 days) for it to hit the fan bigtime, but I was (kinda) ready and waiting for the fallout, so coping so far (ish) Personality changes during dep reductions - oh yes, most definitely. is crying at the drop of a hat, bizarre really, as this is not like him at all normally. We have tried weaning this med slowly over past 2 yrs, long story, but we never quite got there, in the end hosp decided it was time to try him with the diet and no depakote (still on oral diaz as reg AED left). 's history with the diet has been he has been better with each reduction too, but he has nasty withdrawals with all the meds, which is the down side of course.... That case where meds were increased and diet didn't help control - most definitely a probability. Seen it time and time again here on this list, and also with - he lost control soon after gaining daytime control after diet initiation, hosp wanted to increase meds, we insited on decrease instead (mainly after reading others' stories here) and we were right - weaning NOT increasing got control back again. Hate to think where we would be if we had increased to med increases back then. In fact, if hadn't been deficient in carnitine this admission, I am sure neuro would have increased depakote yet again, but even he agreed not a good move when deficient in carnitine and on the diet at the same time. Hence their agreement to try withdrawing instead. Got the hosp discharge summary in the mail today actually, quote 'Epilim (depakote) stopped completely during hosp admission, almost immediate improvement in condition, seizure frequency markedly reduced, drooling resolved and gait steadied'. So there we go, finally an agreement (and in writing to boot) that a med wean was the right thing to do. BUT, as I said before, now we have the fallout to deal with, which aint pretty, not pretty at all. Lotsa TCs at night, spacey 'away' stuff in the day, and so on... Hoping he pulls out of it, otherwise we may have to put it back a bit and try again, but I can live with that I think, especially knowing the hosp agree if it was needed as an AED the seizures would have increased, not decreased as soon as we cut the dose in half. Anyways, rapt to hearTom Tom is doing so well, very happy for you all, Hill ----- Original Message ----- > has been weaned from his Felbitol and we have begun weaning > from Depakote. He started Sunday with a half dose of Depakote and > his regular does of Keppra (which we will be weaning next). Since > Monday evening, cannot go to bed without wearing himself out > by crying. It is almost as if he is suffering from withdrawl > symptoms. He takes his dose of Depakote in the evening and does not > have a dose in the mornings. He is his same ole lovable self all day > long. So...the question is: > > Have any of you experienced similiar personality changes when weaning > from Depakote? > > We haven't called our Neuro because TomTom eventually winds down and > we can tell he isn't in any pain. But we just wonder if this change > is due to the change in meds or possibily just a phase he is > undergoing as a three-year old boy. > > As for seizures...he is SO much better we can't even tell you. Since > we have started weaning from medications, they have even gotten > better. Occassionally he will have a break through, but they are > becoming few and far between. We are even beginning to see some > exciting cognitive development. > > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi , We are in the midst of withdrawal from a rapid depakote wean in hospital, not a pleasant experience, but no regrets - er yet anyway. It has taken about 7 days after the last dose (weaned in 3 stages over 7 days) for it to hit the fan bigtime, but I was (kinda) ready and waiting for the fallout, so coping so far (ish) Personality changes during dep reductions - oh yes, most definitely. is crying at the drop of a hat, bizarre really, as this is not like him at all normally. We have tried weaning this med slowly over past 2 yrs, long story, but we never quite got there, in the end hosp decided it was time to try him with the diet and no depakote (still on oral diaz as reg AED left). 's history with the diet has been he has been better with each reduction too, but he has nasty withdrawals with all the meds, which is the down side of course.... That case where meds were increased and diet didn't help control - most definitely a probability. Seen it time and time again here on this list, and also with - he lost control soon after gaining daytime control after diet initiation, hosp wanted to increase meds, we insited on decrease instead (mainly after reading others' stories here) and we were right - weaning NOT increasing got control back again. Hate to think where we would be if we had increased to med increases back then. In fact, if hadn't been deficient in carnitine this admission, I am sure neuro would have increased depakote yet again, but even he agreed not a good move when deficient in carnitine and on the diet at the same time. Hence their agreement to try withdrawing instead. Got the hosp discharge summary in the mail today actually, quote 'Epilim (depakote) stopped completely during hosp admission, almost immediate improvement in condition, seizure frequency markedly reduced, drooling resolved and gait steadied'. So there we go, finally an agreement (and in writing to boot) that a med wean was the right thing to do. BUT, as I said before, now we have the fallout to deal with, which aint pretty, not pretty at all. Lotsa TCs at night, spacey 'away' stuff in the day, and so on... Hoping he pulls out of it, otherwise we may have to put it back a bit and try again, but I can live with that I think, especially knowing the hosp agree if it was needed as an AED the seizures would have increased, not decreased as soon as we cut the dose in half. Anyways, rapt to hearTom Tom is doing so well, very happy for you all, Hill ----- Original Message ----- > has been weaned from his Felbitol and we have begun weaning > from Depakote. He started Sunday with a half dose of Depakote and > his regular does of Keppra (which we will be weaning next). Since > Monday evening, cannot go to bed without wearing himself out > by crying. It is almost as if he is suffering from withdrawl > symptoms. He takes his dose of Depakote in the evening and does not > have a dose in the mornings. He is his same ole lovable self all day > long. So...the question is: > > Have any of you experienced similiar personality changes when weaning > from Depakote? > > We haven't called our Neuro because TomTom eventually winds down and > we can tell he isn't in any pain. But we just wonder if this change > is due to the change in meds or possibily just a phase he is > undergoing as a three-year old boy. > > As for seizures...he is SO much better we can't even tell you. Since > we have started weaning from medications, they have even gotten > better. Occassionally he will have a break through, but they are > becoming few and far between. We are even beginning to see some > exciting cognitive development. > > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi , We are in the midst of withdrawal from a rapid depakote wean in hospital, not a pleasant experience, but no regrets - er yet anyway. It has taken about 7 days after the last dose (weaned in 3 stages over 7 days) for it to hit the fan bigtime, but I was (kinda) ready and waiting for the fallout, so coping so far (ish) Personality changes during dep reductions - oh yes, most definitely. is crying at the drop of a hat, bizarre really, as this is not like him at all normally. We have tried weaning this med slowly over past 2 yrs, long story, but we never quite got there, in the end hosp decided it was time to try him with the diet and no depakote (still on oral diaz as reg AED left). 's history with the diet has been he has been better with each reduction too, but he has nasty withdrawals with all the meds, which is the down side of course.... That case where meds were increased and diet didn't help control - most definitely a probability. Seen it time and time again here on this list, and also with - he lost control soon after gaining daytime control after diet initiation, hosp wanted to increase meds, we insited on decrease instead (mainly after reading others' stories here) and we were right - weaning NOT increasing got control back again. Hate to think where we would be if we had increased to med increases back then. In fact, if hadn't been deficient in carnitine this admission, I am sure neuro would have increased depakote yet again, but even he agreed not a good move when deficient in carnitine and on the diet at the same time. Hence their agreement to try withdrawing instead. Got the hosp discharge summary in the mail today actually, quote 'Epilim (depakote) stopped completely during hosp admission, almost immediate improvement in condition, seizure frequency markedly reduced, drooling resolved and gait steadied'. So there we go, finally an agreement (and in writing to boot) that a med wean was the right thing to do. BUT, as I said before, now we have the fallout to deal with, which aint pretty, not pretty at all. Lotsa TCs at night, spacey 'away' stuff in the day, and so on... Hoping he pulls out of it, otherwise we may have to put it back a bit and try again, but I can live with that I think, especially knowing the hosp agree if it was needed as an AED the seizures would have increased, not decreased as soon as we cut the dose in half. Anyways, rapt to hearTom Tom is doing so well, very happy for you all, Hill ----- Original Message ----- > has been weaned from his Felbitol and we have begun weaning > from Depakote. He started Sunday with a half dose of Depakote and > his regular does of Keppra (which we will be weaning next). Since > Monday evening, cannot go to bed without wearing himself out > by crying. It is almost as if he is suffering from withdrawl > symptoms. He takes his dose of Depakote in the evening and does not > have a dose in the mornings. He is his same ole lovable self all day > long. So...the question is: > > Have any of you experienced similiar personality changes when weaning > from Depakote? > > We haven't called our Neuro because TomTom eventually winds down and > we can tell he isn't in any pain. But we just wonder if this change > is due to the change in meds or possibily just a phase he is > undergoing as a three-year old boy. > > As for seizures...he is SO much better we can't even tell you. Since > we have started weaning from medications, they have even gotten > better. Occassionally he will have a break through, but they are > becoming few and far between. We are even beginning to see some > exciting cognitive development. > > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 I am beginning to see that as well Bill! You know...all they have to do is READ THE BOOK! Did I say that too loud? I was hoping the Neuro in St. Louis would hear me. > Re: Depakote Wean > > Most neurologists don't know squat about the diet! > > Bill > > > Oh, and I have to share this with you...My wife was speaking to a > > friend whose child WAS on the Ketogenic diet. When my wife queried > > her on why they stopped, she said, " It just didn't work for our > > child. " My wife quizzed her more and found out that they used a Neuro > > in St. Louis. The child evidently didn't see major benefits from the > > diet in the first week so...get this...the Doctor increased the > > medication doses and guess what? The seizures got worse and the > > Neuro would once again increase the dose! Does that sound right to > > anyone or am I thinking that they should have tried increasing the > > ratio and decreasing the meds? In all my reading, I don't think I > > have ever seen where it is advisable to increase medication doses. > > Correct me if I'm wrong though...many of you have much more > > experience at this than I do. > > > > Thanks Gang! > > > > B. Combs > > TomTom's Daddy --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.536 / Virus Database: 331 - Release Date: 11/3/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 I am beginning to see that as well Bill! You know...all they have to do is READ THE BOOK! Did I say that too loud? I was hoping the Neuro in St. Louis would hear me. > Re: Depakote Wean > > Most neurologists don't know squat about the diet! > > Bill > > > Oh, and I have to share this with you...My wife was speaking to a > > friend whose child WAS on the Ketogenic diet. When my wife queried > > her on why they stopped, she said, " It just didn't work for our > > child. " My wife quizzed her more and found out that they used a Neuro > > in St. Louis. The child evidently didn't see major benefits from the > > diet in the first week so...get this...the Doctor increased the > > medication doses and guess what? The seizures got worse and the > > Neuro would once again increase the dose! Does that sound right to > > anyone or am I thinking that they should have tried increasing the > > ratio and decreasing the meds? In all my reading, I don't think I > > have ever seen where it is advisable to increase medication doses. > > Correct me if I'm wrong though...many of you have much more > > experience at this than I do. > > > > Thanks Gang! > > > > B. Combs > > TomTom's Daddy --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.536 / Virus Database: 331 - Release Date: 11/3/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi, We just finished a 9 week wean. A pill a week. For the first 3 day he was so grouchy!! He improved daily after that. Now that he is off he is a sweet little boy. He has been drugged since 17 months old now he's 4 1/2 yrs. I don't remember his personality then. He has one now! Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2003 Report Share Posted November 5, 2003 Oh yeah, been there, done that......don't want to do that again was okay until the last few dep drops as I remember. Then with each drop near the end, she would use it. Crying, screaming, inconsolable for no apparent reason. And into that state where nothing, absoloutely nothing, made her happy. She would say she wanted X, so you would give it to her, she would cry harder, saying she didn't want it, so you took it away, she got even more upset......and on and on it went. I also remember seeing what I was pretty positive (and the list at the time agreed) was drop seizures during one drop near the end. She has never had them before or since but had 3 in half an hour, one as she was walking down stairs. The last drop was so so so bad in the emotional intensity, that I thought we might end up having to take her to the psych ward or ER if it didn't stop, sad thought for a little five year old kid. Fortunately, it eventually calmed down that night. There was another lady weaning dep on the list at the same time, went through major behaviour with her son, who was about a year or so older than Jess, including him breaking windows. That was when we came up our motto " This too shall pass, this too shall pass........ " After all, everything evenually does, right? Know what bugs me about the whole thing though, I never mentionned any of these incidents to the neuro. So he thought her wean was fine. Although he did drop the label of behaviuor disorder after the dep was gone, she was a different kid. Wasn't intentional not to tell him, just that we didn't see him until a couple of months afterwads and I never even thought of it during out next visit. As far as the other story, yeah, drives me crazy......so many drs don't know squat about the diet but they sure pretend they do - if it doesn't work within a week or two it obviously ain't gonna work theys say. Heck, they would even give their stupid AEDs longer than that to work, and if they didn't work, they would up teh dose. But no concept of fine tuning the diet. Glad Tom Tom is doing so well. Hang tight with the wean, hopefully you won't have to put any back. And just keep repeating " this too shall pass, this too shall pass....... " Consider yourself inducted into a new club , 's mom " B. Combs " wrote: > has been weaned from his Felbitol and we have begun weaning > from Depakote. He started Sunday with a half dose of Depakote and > his regular does of Keppra (which we will be weaning next). Since > Monday evening, cannot go to bed without wearing himself out > by crying. It is almost as if he is suffering from withdrawl > symptoms. He takes his dose of Depakote in the evening and does not > have a dose in the mornings. He is his same ole lovable self all day > long. So...the question is: > > Have any of you experienced similiar personality changes when weaning > from Depakote? > > We haven't called our Neuro because TomTom eventually winds down and > we can tell he isn't in any pain. But we just wonder if this change > is due to the change in meds or possibily just a phase he is > undergoing as a three-year old boy. > > As for seizures...he is SO much better we can't even tell you. Since > we have started weaning from medications, they have even gotten > better. Occassionally he will have a break through, but they are > becoming few and far between. We are even beginning to see some > exciting cognitive development. > > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2003 Report Share Posted November 5, 2003 Oh yeah, been there, done that......don't want to do that again was okay until the last few dep drops as I remember. Then with each drop near the end, she would use it. Crying, screaming, inconsolable for no apparent reason. And into that state where nothing, absoloutely nothing, made her happy. She would say she wanted X, so you would give it to her, she would cry harder, saying she didn't want it, so you took it away, she got even more upset......and on and on it went. I also remember seeing what I was pretty positive (and the list at the time agreed) was drop seizures during one drop near the end. She has never had them before or since but had 3 in half an hour, one as she was walking down stairs. The last drop was so so so bad in the emotional intensity, that I thought we might end up having to take her to the psych ward or ER if it didn't stop, sad thought for a little five year old kid. Fortunately, it eventually calmed down that night. There was another lady weaning dep on the list at the same time, went through major behaviour with her son, who was about a year or so older than Jess, including him breaking windows. That was when we came up our motto " This too shall pass, this too shall pass........ " After all, everything evenually does, right? Know what bugs me about the whole thing though, I never mentionned any of these incidents to the neuro. So he thought her wean was fine. Although he did drop the label of behaviuor disorder after the dep was gone, she was a different kid. Wasn't intentional not to tell him, just that we didn't see him until a couple of months afterwads and I never even thought of it during out next visit. As far as the other story, yeah, drives me crazy......so many drs don't know squat about the diet but they sure pretend they do - if it doesn't work within a week or two it obviously ain't gonna work theys say. Heck, they would even give their stupid AEDs longer than that to work, and if they didn't work, they would up teh dose. But no concept of fine tuning the diet. Glad Tom Tom is doing so well. Hang tight with the wean, hopefully you won't have to put any back. And just keep repeating " this too shall pass, this too shall pass....... " Consider yourself inducted into a new club , 's mom " B. Combs " wrote: > has been weaned from his Felbitol and we have begun weaning > from Depakote. He started Sunday with a half dose of Depakote and > his regular does of Keppra (which we will be weaning next). Since > Monday evening, cannot go to bed without wearing himself out > by crying. It is almost as if he is suffering from withdrawl > symptoms. He takes his dose of Depakote in the evening and does not > have a dose in the mornings. He is his same ole lovable self all day > long. So...the question is: > > Have any of you experienced similiar personality changes when weaning > from Depakote? > > We haven't called our Neuro because TomTom eventually winds down and > we can tell he isn't in any pain. But we just wonder if this change > is due to the change in meds or possibily just a phase he is > undergoing as a three-year old boy. > > As for seizures...he is SO much better we can't even tell you. Since > we have started weaning from medications, they have even gotten > better. Occassionally he will have a break through, but they are > becoming few and far between. We are even beginning to see some > exciting cognitive development. > > Oh, and I have to share this with you...My wife was speaking to a > friend whose child WAS on the Ketogenic diet. When my wife queried > her on why they stopped, she said, " It just didn't work for our > child. " My wife quizzed her more and found out that they used a Neuro > in St. Louis. The child evidently didn't see major benefits from the > diet in the first week so...get this...the Doctor increased the > medication doses and guess what? The seizures got worse and the > Neuro would once again increase the dose! Does that sound right to > anyone or am I thinking that they should have tried increasing the > ratio and decreasing the meds? In all my reading, I don't think I > have ever seen where it is advisable to increase medication doses. > Correct me if I'm wrong though...many of you have much more > experience at this than I do. > > Thanks Gang! > > B. Combs > TomTom's Daddy Quote Link to comment Share on other sites More sharing options...
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