Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 -- Hang in there...it's SO disappointing to see a seizure after a period seizure free! Yes, one jerk is too many, but don't let it panic you, ok? Knee-jerk reactions will only confuse the picture, so you don't want to get into that. Personally, I would suggest hanging tight until you see the dietician unless you see a regular pattern develop. It was 1 1/2 weeks ago since you dropped the last med dose...and Day 10 seems to be a biggie for weaning fallout. We saw something on Day 10 like clockwork with every dose drop, and I think a number of other families have had similar experiences. The stomach flu might also be adding it's own little twist here. Give it time to clear his system and let his body adjust. Deeeeeep breaths. Hopefully this is the final seizure you have seen. Rose-Marie, mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 -- Hang in there...it's SO disappointing to see a seizure after a period seizure free! Yes, one jerk is too many, but don't let it panic you, ok? Knee-jerk reactions will only confuse the picture, so you don't want to get into that. Personally, I would suggest hanging tight until you see the dietician unless you see a regular pattern develop. It was 1 1/2 weeks ago since you dropped the last med dose...and Day 10 seems to be a biggie for weaning fallout. We saw something on Day 10 like clockwork with every dose drop, and I think a number of other families have had similar experiences. The stomach flu might also be adding it's own little twist here. Give it time to clear his system and let his body adjust. Deeeeeep breaths. Hopefully this is the final seizure you have seen. Rose-Marie, mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 -- Hang in there...it's SO disappointing to see a seizure after a period seizure free! Yes, one jerk is too many, but don't let it panic you, ok? Knee-jerk reactions will only confuse the picture, so you don't want to get into that. Personally, I would suggest hanging tight until you see the dietician unless you see a regular pattern develop. It was 1 1/2 weeks ago since you dropped the last med dose...and Day 10 seems to be a biggie for weaning fallout. We saw something on Day 10 like clockwork with every dose drop, and I think a number of other families have had similar experiences. The stomach flu might also be adding it's own little twist here. Give it time to clear his system and let his body adjust. Deeeeeep breaths. Hopefully this is the final seizure you have seen. Rose-Marie, mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. Patti, mom to Katera, former Keto Kid for over two years Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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 April 8, 2004 Report Share Posted April 8, 2004 , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. Patti, mom to Katera, former Keto Kid for over two years Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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 April 8, 2004 Report Share Posted April 8, 2004 , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. Patti, mom to Katera, former Keto Kid for over two years Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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 April 8, 2004 Report Share Posted April 8, 2004 Rose-Marie, Good advice - in my panic mode, I actually forgot about the " day 10 " fallout. We, too, used to have increased seizure activity around the 10th day. Guess I just needed reassurance - we will sit tight and ride it out! I'll be soooo glad when these meds are out of his system altogether. -- In ketogenic , " cutekidsab " <don_gal@m...> wrote: > -- > > Hang in there...it's SO disappointing to see a seizure after a > period seizure free! Yes, one jerk is too many, but don't let it > panic you, ok? Knee-jerk reactions will only confuse the picture, > so you don't want to get into that. > > Personally, I would suggest hanging tight until you see the > dietician unless you see a regular pattern develop. It was 1 1/2 > weeks ago since you dropped the last med dose...and Day 10 seems to > be a biggie for weaning fallout. We saw something on Day 10 like > clockwork with every dose drop, and I think a number of other > families have had similar experiences. > > The stomach flu might also be adding it's own little twist here. > Give it time to clear his system and let his body adjust. > > Deeeeeep breaths. Hopefully this is the final seizure you have seen. > > Rose-Marie, > mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Rose-Marie, Good advice - in my panic mode, I actually forgot about the " day 10 " fallout. We, too, used to have increased seizure activity around the 10th day. Guess I just needed reassurance - we will sit tight and ride it out! I'll be soooo glad when these meds are out of his system altogether. -- In ketogenic , " cutekidsab " <don_gal@m...> wrote: > -- > > Hang in there...it's SO disappointing to see a seizure after a > period seizure free! Yes, one jerk is too many, but don't let it > panic you, ok? Knee-jerk reactions will only confuse the picture, > so you don't want to get into that. > > Personally, I would suggest hanging tight until you see the > dietician unless you see a regular pattern develop. It was 1 1/2 > weeks ago since you dropped the last med dose...and Day 10 seems to > be a biggie for weaning fallout. We saw something on Day 10 like > clockwork with every dose drop, and I think a number of other > families have had similar experiences. > > The stomach flu might also be adding it's own little twist here. > Give it time to clear his system and let his body adjust. > > Deeeeeep breaths. Hopefully this is the final seizure you have seen. > > Rose-Marie, > mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Rose-Marie, Good advice - in my panic mode, I actually forgot about the " day 10 " fallout. We, too, used to have increased seizure activity around the 10th day. Guess I just needed reassurance - we will sit tight and ride it out! I'll be soooo glad when these meds are out of his system altogether. -- In ketogenic , " cutekidsab " <don_gal@m...> wrote: > -- > > Hang in there...it's SO disappointing to see a seizure after a > period seizure free! Yes, one jerk is too many, but don't let it > panic you, ok? Knee-jerk reactions will only confuse the picture, > so you don't want to get into that. > > Personally, I would suggest hanging tight until you see the > dietician unless you see a regular pattern develop. It was 1 1/2 > weeks ago since you dropped the last med dose...and Day 10 seems to > be a biggie for weaning fallout. We saw something on Day 10 like > clockwork with every dose drop, and I think a number of other > families have had similar experiences. > > The stomach flu might also be adding it's own little twist here. > Give it time to clear his system and let his body adjust. > > Deeeeeep breaths. Hopefully this is the final seizure you have seen. > > Rose-Marie, > mom to , age 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Patti- Thanks for responding - you are right - sometimes it is hard to step back and look at the big picture, and I'll have to say, patience isn't my strongest virtue! I will try the epsom salt baths - we were doing them for awhile then stopped. really likes them. And, it does make more sense to just wait, let the meds work their way out, then decide what changes, if any need to be made. UGH.... is about all I can think about! Many many thanks, as usual! -- In ketogenic , " Patti " <durovchic@c...> wrote: > , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. > > Patti, mom to Katera, former Keto Kid for over two years > Help! Need advice > > > Oh... I'm so disappointed and just want some advice. has been > med free since 3/27. Overall, things are MUCH better seizure wise. > Has had 2 seizures but at least one of them happened when he had the > stomach flu 4 days ago. The best part is that until minutes ago, we > thought the myoclonic jerks were completely gone BUT out of nowhere, > he did a face plant on the hard wood floor. I truly thought we saw > the last of these but am wondering where this came from. Since he is > now off meds, my husband and I have been wondering about the need to > tweak the diet to get optimal control (now I am wondering even more). > We currently don't have a dietician to bounce around ideas (will be > meeting for the first time the beginning of May). My question is: > since it has only been 1.5 wks. since we've gotten rid of meds, should > we wait to tweak the diet (i.e. cut calories??)until the medication is > completely purged from his system (until we meet w/dietician in May) > and his body has a chance to get used to metabolism changes or > possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. > He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, > and 3.2g.cho. > > I guess I'm just ancy b/c things were going great then he had a > seizure 4 days ago (stomache flu), again yesterday, and then a jerk > this morning. Could it be that the medication is just not completely > out of his system and that's why he had a jerk (I know, it's only one > in the past 1.5 wks. BUT one is more than enough!) It's probably a > good sign that we can get rid of these since they have virtually > disappeared but I guess I'm just overly anxious to do something w/the > diet - but my husband is leaning toward waiting until May to make > changes to let his body adjust. What to do????? > > Your thoughts/suggestions, as always, are very much appreciated! > (mom to 2 yrs. old - ketokid since 7/03 - and med free > since 3/27) > > > > " 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 April 8, 2004 Report Share Posted April 8, 2004 Patti- Thanks for responding - you are right - sometimes it is hard to step back and look at the big picture, and I'll have to say, patience isn't my strongest virtue! I will try the epsom salt baths - we were doing them for awhile then stopped. really likes them. And, it does make more sense to just wait, let the meds work their way out, then decide what changes, if any need to be made. UGH.... is about all I can think about! Many many thanks, as usual! -- In ketogenic , " Patti " <durovchic@c...> wrote: > , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. > > Patti, mom to Katera, former Keto Kid for over two years > Help! Need advice > > > Oh... I'm so disappointed and just want some advice. has been > med free since 3/27. Overall, things are MUCH better seizure wise. > Has had 2 seizures but at least one of them happened when he had the > stomach flu 4 days ago. The best part is that until minutes ago, we > thought the myoclonic jerks were completely gone BUT out of nowhere, > he did a face plant on the hard wood floor. I truly thought we saw > the last of these but am wondering where this came from. Since he is > now off meds, my husband and I have been wondering about the need to > tweak the diet to get optimal control (now I am wondering even more). > We currently don't have a dietician to bounce around ideas (will be > meeting for the first time the beginning of May). My question is: > since it has only been 1.5 wks. since we've gotten rid of meds, should > we wait to tweak the diet (i.e. cut calories??)until the medication is > completely purged from his system (until we meet w/dietician in May) > and his body has a chance to get used to metabolism changes or > possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. > He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, > and 3.2g.cho. > > I guess I'm just ancy b/c things were going great then he had a > seizure 4 days ago (stomache flu), again yesterday, and then a jerk > this morning. Could it be that the medication is just not completely > out of his system and that's why he had a jerk (I know, it's only one > in the past 1.5 wks. BUT one is more than enough!) It's probably a > good sign that we can get rid of these since they have virtually > disappeared but I guess I'm just overly anxious to do something w/the > diet - but my husband is leaning toward waiting until May to make > changes to let his body adjust. What to do????? > > Your thoughts/suggestions, as always, are very much appreciated! > (mom to 2 yrs. old - ketokid since 7/03 - and med free > since 3/27) > > > > " 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 April 8, 2004 Report Share Posted April 8, 2004 Patti- Thanks for responding - you are right - sometimes it is hard to step back and look at the big picture, and I'll have to say, patience isn't my strongest virtue! I will try the epsom salt baths - we were doing them for awhile then stopped. really likes them. And, it does make more sense to just wait, let the meds work their way out, then decide what changes, if any need to be made. UGH.... is about all I can think about! Many many thanks, as usual! -- In ketogenic , " Patti " <durovchic@c...> wrote: > , It can take months for the last of the meds to work their way out. I hope you see things settling down as some more time goes by.....and that the general trend is a good one. Sometimes it's really hard to step back and look at the big picture. You might consider epsom salts baths to help him with detoxing the last of it. If I were you, I think I'd try to hold off on making any changes just yet, since it was just so recently that he had his last dose...... and then you had the illness thrown into the mix, too. > > Patti, mom to Katera, former Keto Kid for over two years > Help! Need advice > > > Oh... I'm so disappointed and just want some advice. has been > med free since 3/27. Overall, things are MUCH better seizure wise. > Has had 2 seizures but at least one of them happened when he had the > stomach flu 4 days ago. The best part is that until minutes ago, we > thought the myoclonic jerks were completely gone BUT out of nowhere, > he did a face plant on the hard wood floor. I truly thought we saw > the last of these but am wondering where this came from. Since he is > now off meds, my husband and I have been wondering about the need to > tweak the diet to get optimal control (now I am wondering even more). > We currently don't have a dietician to bounce around ideas (will be > meeting for the first time the beginning of May). My question is: > since it has only been 1.5 wks. since we've gotten rid of meds, should > we wait to tweak the diet (i.e. cut calories??)until the medication is > completely purged from his system (until we meet w/dietician in May) > and his body has a chance to get used to metabolism changes or > possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. > He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, > and 3.2g.cho. > > I guess I'm just ancy b/c things were going great then he had a > seizure 4 days ago (stomache flu), again yesterday, and then a jerk > this morning. Could it be that the medication is just not completely > out of his system and that's why he had a jerk (I know, it's only one > in the past 1.5 wks. BUT one is more than enough!) It's probably a > good sign that we can get rid of these since they have virtually > disappeared but I guess I'm just overly anxious to do something w/the > diet - but my husband is leaning toward waiting until May to make > changes to let his body adjust. What to do????? > > Your thoughts/suggestions, as always, are very much appreciated! > (mom to 2 yrs. old - ketokid since 7/03 - and med free > since 3/27) > > > > " 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 April 8, 2004 Report Share Posted April 8, 2004 Dear , Forgive me please, I'm just trying to poach some information for a friend who's daughter has epilepsy. May I ask what age is , & approx how long has been on the diet ? Many thanks, Phil Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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 April 8, 2004 Report Share Posted April 8, 2004 Dear , Forgive me please, I'm just trying to poach some information for a friend who's daughter has epilepsy. May I ask what age is , & approx how long has been on the diet ? Many thanks, Phil Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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 April 8, 2004 Report Share Posted April 8, 2004 Dear , Forgive me please, I'm just trying to poach some information for a friend who's daughter has epilepsy. May I ask what age is , & approx how long has been on the diet ? Many thanks, Phil Help! Need advice Oh... I'm so disappointed and just want some advice. has been med free since 3/27. Overall, things are MUCH better seizure wise. Has had 2 seizures but at least one of them happened when he had the stomach flu 4 days ago. The best part is that until minutes ago, we thought the myoclonic jerks were completely gone BUT out of nowhere, he did a face plant on the hard wood floor. I truly thought we saw the last of these but am wondering where this came from. Since he is now off meds, my husband and I have been wondering about the need to tweak the diet to get optimal control (now I am wondering even more). We currently don't have a dietician to bounce around ideas (will be meeting for the first time the beginning of May). My question is: since it has only been 1.5 wks. since we've gotten rid of meds, should we wait to tweak the diet (i.e. cut calories??)until the medication is completely purged from his system (until we meet w/dietician in May) and his body has a chance to get used to metabolism changes or possibly make changes now? He weighs 31 lbs. is 35.5 inches tall. He's on 3:1 ratio - 980 cal./day (245 per meal) 4.8g.prot., 23.7g.fat, and 3.2g.cho. I guess I'm just ancy b/c things were going great then he had a seizure 4 days ago (stomache flu), again yesterday, and then a jerk this morning. Could it be that the medication is just not completely out of his system and that's why he had a jerk (I know, it's only one in the past 1.5 wks. BUT one is more than enough!) It's probably a good sign that we can get rid of these since they have virtually disappeared but I guess I'm just overly anxious to do something w/the diet - but my husband is leaning toward waiting until May to make changes to let his body adjust. What to do????? Your thoughts/suggestions, as always, are very much appreciated! (mom to 2 yrs. old - ketokid since 7/03 - and med free since 3/27) " 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...
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