Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 My son has different types of seizures (myoclonics and drops are the 'important' ones here) and did have trouble with ketosis (would be low in the am and climb during the day then fall overnite when he wasnt eating - go figure) Anyway, we started Sigma Tau Carnitine (Carnitor) and the seizures got a little worse - but it was hard to tell because he was still having seizures at that time, not that he was anywhere seizure free or anything at that time. Anyway, after I think it was about 3 weeks or so, things slowly calmed down until he was coming home from school with notes that he wasnt having any myoclonic seizures during the mornings (at that time he was only in school mornings in K) and he would continue to not have them for the rest of the day - within 2 months after starting it he was virtually day time seizure free (at this point he had been having myoclonics and drops quite a bit during the day - they could record about 17 between 9:30 - 11:30am. I was a bit worried to give it after reading the insert as well, but when I talked to the pharmacist about this he said that ALL negative reactions to any medication have to be noted on the pamphlet and that this could be the reaction of a very small amount of people but it still has to be listed. I have forgotten or not given it to him here and there - when he was sick, or if he would have a tc during sleep and not be awake enough for meds/breakfast in the morning, but if he missed two doses - either in a row the same day or two mornings in a row, his myoclonics would come back and he would have quite a bit of inbetween twitching (and the tc's would come back more at nite) so we have not attempted to stop it (dont know what his last level was but neuro has not mentioned tapering so I assume he still needs it) I know some have had big problems when adding this but for Mike it was one of the best things we have ever done for him. Mike is 7 yrs old - 49lbs and is on 990mg per day. This is the dose he was started on in September '02 and he was 47lbs then. Jenn mom to Mike - med free for a week now (no fallout, knock wood!) and seizure free since Dec 11/03 Keto kid since June 14/01 I am hesitant to try it as the information that comes with the box indicates that someone with a pre-existing seizure activity, an increase in seizure frequency/and/or severity has been reported. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 My son has different types of seizures (myoclonics and drops are the 'important' ones here) and did have trouble with ketosis (would be low in the am and climb during the day then fall overnite when he wasnt eating - go figure) Anyway, we started Sigma Tau Carnitine (Carnitor) and the seizures got a little worse - but it was hard to tell because he was still having seizures at that time, not that he was anywhere seizure free or anything at that time. Anyway, after I think it was about 3 weeks or so, things slowly calmed down until he was coming home from school with notes that he wasnt having any myoclonic seizures during the mornings (at that time he was only in school mornings in K) and he would continue to not have them for the rest of the day - within 2 months after starting it he was virtually day time seizure free (at this point he had been having myoclonics and drops quite a bit during the day - they could record about 17 between 9:30 - 11:30am. I was a bit worried to give it after reading the insert as well, but when I talked to the pharmacist about this he said that ALL negative reactions to any medication have to be noted on the pamphlet and that this could be the reaction of a very small amount of people but it still has to be listed. I have forgotten or not given it to him here and there - when he was sick, or if he would have a tc during sleep and not be awake enough for meds/breakfast in the morning, but if he missed two doses - either in a row the same day or two mornings in a row, his myoclonics would come back and he would have quite a bit of inbetween twitching (and the tc's would come back more at nite) so we have not attempted to stop it (dont know what his last level was but neuro has not mentioned tapering so I assume he still needs it) I know some have had big problems when adding this but for Mike it was one of the best things we have ever done for him. Mike is 7 yrs old - 49lbs and is on 990mg per day. This is the dose he was started on in September '02 and he was 47lbs then. Jenn mom to Mike - med free for a week now (no fallout, knock wood!) and seizure free since Dec 11/03 Keto kid since June 14/01 I am hesitant to try it as the information that comes with the box indicates that someone with a pre-existing seizure activity, an increase in seizure frequency/and/or severity has been reported. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 My son has different types of seizures (myoclonics and drops are the 'important' ones here) and did have trouble with ketosis (would be low in the am and climb during the day then fall overnite when he wasnt eating - go figure) Anyway, we started Sigma Tau Carnitine (Carnitor) and the seizures got a little worse - but it was hard to tell because he was still having seizures at that time, not that he was anywhere seizure free or anything at that time. Anyway, after I think it was about 3 weeks or so, things slowly calmed down until he was coming home from school with notes that he wasnt having any myoclonic seizures during the mornings (at that time he was only in school mornings in K) and he would continue to not have them for the rest of the day - within 2 months after starting it he was virtually day time seizure free (at this point he had been having myoclonics and drops quite a bit during the day - they could record about 17 between 9:30 - 11:30am. I was a bit worried to give it after reading the insert as well, but when I talked to the pharmacist about this he said that ALL negative reactions to any medication have to be noted on the pamphlet and that this could be the reaction of a very small amount of people but it still has to be listed. I have forgotten or not given it to him here and there - when he was sick, or if he would have a tc during sleep and not be awake enough for meds/breakfast in the morning, but if he missed two doses - either in a row the same day or two mornings in a row, his myoclonics would come back and he would have quite a bit of inbetween twitching (and the tc's would come back more at nite) so we have not attempted to stop it (dont know what his last level was but neuro has not mentioned tapering so I assume he still needs it) I know some have had big problems when adding this but for Mike it was one of the best things we have ever done for him. Mike is 7 yrs old - 49lbs and is on 990mg per day. This is the dose he was started on in September '02 and he was 47lbs then. Jenn mom to Mike - med free for a week now (no fallout, knock wood!) and seizure free since Dec 11/03 Keto kid since June 14/01 I am hesitant to try it as the information that comes with the box indicates that someone with a pre-existing seizure activity, an increase in seizure frequency/and/or severity has been reported. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi Jenn. With Kristan, she has good days and bad days and I know that when we start it and if seizures increase I will immediately freak and think it is the Carnitor. Kristan's day time seizures come and go, for a while the daytime seizures were gone, but lately they have been reappearing. It's all so frustrating, but I think we are leaning towards trying it, it'll be one more thing that if we don't try, we will always wonder. That's great that is seizure free. Thanks for the info. Satnam > My son has different types of seizures (myoclonics and drops are the 'important' ones here) and did have trouble with ketosis (would be low in the am and climb during the day then fall overnite when he wasnt eating - go figure) Anyway, we started Sigma Tau Carnitine (Carnitor) and the seizures got a little worse - but it was hard to tell because he was still having seizures at that time, not that he was anywhere seizure free or anything at that time. Anyway, after I think it was about 3 weeks or so, things slowly calmed down until he was coming home from school with notes that he wasnt having any myoclonic seizures during the mornings (at that time he was only in school mornings in K) and he would continue to not have them for the rest of the day - within 2 months after starting it he was virtually day time seizure free (at this point he had been having myoclonics and drops quite a bit during the day - they could record about 17 between 9:30 - 11:30am. > > I was a bit worried to give it after reading the insert as well, but when I talked to the pharmacist about this he said that ALL negative reactions to any medication have to be noted on the pamphlet and that this could be the reaction of a very small amount of people but it still has to be listed. > > I have forgotten or not given it to him here and there - when he was sick, or if he would have a tc during sleep and not be awake enough for meds/breakfast in the morning, but if he missed two doses - either in a row the same day or two mornings in a row, his myoclonics would come back and he would have quite a bit of inbetween twitching (and the tc's would come back more at nite) so we have not attempted to stop it (dont know what his last level was but neuro has not mentioned tapering so I assume he still needs it) > > I know some have had big problems when adding this but for Mike it was one of the best things we have ever done for him. > > Mike is 7 yrs old - 49lbs and is on 990mg per day. This is the dose he was started on in September '02 and he was 47lbs then. > > Jenn > mom to Mike - med free for a week now (no fallout, knock wood!) and seizure free since Dec 11/03 > Keto kid since June 14/01 > > > > I am hesitant to try it as the information that comes with the box > indicates that someone with a pre-existing seizure activity, an > increase in seizure frequency/and/or severity has been reported. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Jen, where do you get your Sigma Tau canithine from? Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Jen, where do you get your Sigma Tau canithine from? Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 I get mine from our pharmacist - it is expensive but we have it covered here. Jenn Re: Carnitine Question Jen, where do you get your Sigma Tau canithine from? Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Bryce is on Carnitore, one tablet 3 times a day; he weighs 35#. We crush it and mix it in his food or cream. He was started because his carnitine level fell after on the diet for 3 months, compared to a normal level before. It has not caused any seizures, and is commonly used on the diet. In some centers, they start it automatically despite the carnitine levels. If anything, it's helped Bryce's ketosis. There is a relationship between Depakote and low carnitine levels; some feel that the meds lower the levels not the Depakote. Our neuro wants Bryce on the Depakote for one full year once seizure free; I'm curious to see what the carnitine level is once we're off the Depakote. Warining, it does make his urine and stool have a very strong nasty fishy smell. Whatever it takes,though, we moms will do! Good luck! Debbie (mom to Bryce, 5) > Hi, I've read previous posts about carnitine and Carn-A-Ware. > Kristan's dietitian has recommended Carnitor (Levocarnitine) tablets > to see if it will help get her into higher ketosis. I am waiting to > hear what dosage they will put her on, but she mentioned something > like 50 mg per kilo. She has to discuss with the neuro first and > then will advise if we are to proceed with it. > > I am hesitant to try it as the information that comes with the box > indicates that someone with a pre-existing seizure activity, an > increase in seizure frequency/and/or severity has been reported. > > Is Carnitor the same as Carn-A-Ware? Does anyone else use Carnitor > and has anyone noticed increased seizures/severity once they started > to use it. > > Thanks. > > Satnam, mom to Kristan, 17 months > Keto Kid since August 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Bryce is on Carnitore, one tablet 3 times a day; he weighs 35#. We crush it and mix it in his food or cream. He was started because his carnitine level fell after on the diet for 3 months, compared to a normal level before. It has not caused any seizures, and is commonly used on the diet. In some centers, they start it automatically despite the carnitine levels. If anything, it's helped Bryce's ketosis. There is a relationship between Depakote and low carnitine levels; some feel that the meds lower the levels not the Depakote. Our neuro wants Bryce on the Depakote for one full year once seizure free; I'm curious to see what the carnitine level is once we're off the Depakote. Warining, it does make his urine and stool have a very strong nasty fishy smell. Whatever it takes,though, we moms will do! Good luck! Debbie (mom to Bryce, 5) > Hi, I've read previous posts about carnitine and Carn-A-Ware. > Kristan's dietitian has recommended Carnitor (Levocarnitine) tablets > to see if it will help get her into higher ketosis. I am waiting to > hear what dosage they will put her on, but she mentioned something > like 50 mg per kilo. She has to discuss with the neuro first and > then will advise if we are to proceed with it. > > I am hesitant to try it as the information that comes with the box > indicates that someone with a pre-existing seizure activity, an > increase in seizure frequency/and/or severity has been reported. > > Is Carnitor the same as Carn-A-Ware? Does anyone else use Carnitor > and has anyone noticed increased seizures/severity once they started > to use it. > > Thanks. > > Satnam, mom to Kristan, 17 months > Keto Kid since August 2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Bryce is on Carnitore, one tablet 3 times a day; he weighs 35#. We crush it and mix it in his food or cream. He was started because his carnitine level fell after on the diet for 3 months, compared to a normal level before. It has not caused any seizures, and is commonly used on the diet. In some centers, they start it automatically despite the carnitine levels. If anything, it's helped Bryce's ketosis. There is a relationship between Depakote and low carnitine levels; some feel that the meds lower the levels not the Depakote. Our neuro wants Bryce on the Depakote for one full year once seizure free; I'm curious to see what the carnitine level is once we're off the Depakote. Warining, it does make his urine and stool have a very strong nasty fishy smell. Whatever it takes,though, we moms will do! Good luck! Debbie (mom to Bryce, 5) > Hi, I've read previous posts about carnitine and Carn-A-Ware. > Kristan's dietitian has recommended Carnitor (Levocarnitine) tablets > to see if it will help get her into higher ketosis. I am waiting to > hear what dosage they will put her on, but she mentioned something > like 50 mg per kilo. She has to discuss with the neuro first and > then will advise if we are to proceed with it. > > I am hesitant to try it as the information that comes with the box > indicates that someone with a pre-existing seizure activity, an > increase in seizure frequency/and/or severity has been reported. > > Is Carnitor the same as Carn-A-Ware? Does anyone else use Carnitor > and has anyone noticed increased seizures/severity once they started > to use it. > > Thanks. > > Satnam, mom to Kristan, 17 months > Keto Kid since August 2003 Quote Link to comment Share on other sites More sharing options...
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