Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Carolyn, The 225mg of Trileptal at night definitely helps Shan. If she misses a dose she will have seizures during the night. She use to be on Tegretol. During the first 6 months of the diet we weaned her completely off. With the last dose drop the seizures came back very bad. Over 3 weeks they progressively got worse and Shan's life began to deteriorate to the point her left side was nearly paralysed (left arm was paralysed). When we gave back the small dose of Tegretol everything improved immediately and kept getting better. We switched over to Trileptal and have stayed with the 225mg dose. About 6 months ago when the seizures were increasing we increased the trileptal to see if it would help. It did not help and we went back to 225mg. What helped was tweaking the diet. Shan has been on the 225mg Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 others on this list have tried the trileptal at night only and are having success. I'm guessing that the Trileptal is the reason ael's seizures have improved. 225mg is an extremely low dose and its half life is bout 7 hours. I have been so thankful that this small dose with little or no side effects has been such a great help to Shan and others. Unfortunately, neurologists seem to not be aware that the drug can help in this way. It took us being willing to experiment even though the neurologist said it would not work. Hoping ael continues to have better days. Rhonda Rhonda, aël is a little better since I reorganize the diet from last tuesday but at the same time I put 225 mg of trileptal so I don't know what does really work.... In fact, I tried trileptal again ( we tried it a long time ago but because Nath had had a trombopenia with tegretol, doctors didn't want to try it, it's the same family) because I've read the case of your daughter... You're right when you say this group helps and it's my only way to sort it out. And does Trileptal still good for Shan? Thank you Carolyn, mom to aël Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Carolyn, The 225mg of Trileptal at night definitely helps Shan. If she misses a dose she will have seizures during the night. She use to be on Tegretol. During the first 6 months of the diet we weaned her completely off. With the last dose drop the seizures came back very bad. Over 3 weeks they progressively got worse and Shan's life began to deteriorate to the point her left side was nearly paralysed (left arm was paralysed). When we gave back the small dose of Tegretol everything improved immediately and kept getting better. We switched over to Trileptal and have stayed with the 225mg dose. About 6 months ago when the seizures were increasing we increased the trileptal to see if it would help. It did not help and we went back to 225mg. What helped was tweaking the diet. Shan has been on the 225mg Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 others on this list have tried the trileptal at night only and are having success. I'm guessing that the Trileptal is the reason ael's seizures have improved. 225mg is an extremely low dose and its half life is bout 7 hours. I have been so thankful that this small dose with little or no side effects has been such a great help to Shan and others. Unfortunately, neurologists seem to not be aware that the drug can help in this way. It took us being willing to experiment even though the neurologist said it would not work. Hoping ael continues to have better days. Rhonda Rhonda, aël is a little better since I reorganize the diet from last tuesday but at the same time I put 225 mg of trileptal so I don't know what does really work.... In fact, I tried trileptal again ( we tried it a long time ago but because Nath had had a trombopenia with tegretol, doctors didn't want to try it, it's the same family) because I've read the case of your daughter... You're right when you say this group helps and it's my only way to sort it out. And does Trileptal still good for Shan? Thank you Carolyn, mom to aël Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Carolyn, The 225mg of Trileptal at night definitely helps Shan. If she misses a dose she will have seizures during the night. She use to be on Tegretol. During the first 6 months of the diet we weaned her completely off. With the last dose drop the seizures came back very bad. Over 3 weeks they progressively got worse and Shan's life began to deteriorate to the point her left side was nearly paralysed (left arm was paralysed). When we gave back the small dose of Tegretol everything improved immediately and kept getting better. We switched over to Trileptal and have stayed with the 225mg dose. About 6 months ago when the seizures were increasing we increased the trileptal to see if it would help. It did not help and we went back to 225mg. What helped was tweaking the diet. Shan has been on the 225mg Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 others on this list have tried the trileptal at night only and are having success. I'm guessing that the Trileptal is the reason ael's seizures have improved. 225mg is an extremely low dose and its half life is bout 7 hours. I have been so thankful that this small dose with little or no side effects has been such a great help to Shan and others. Unfortunately, neurologists seem to not be aware that the drug can help in this way. It took us being willing to experiment even though the neurologist said it would not work. Hoping ael continues to have better days. Rhonda Rhonda, aël is a little better since I reorganize the diet from last tuesday but at the same time I put 225 mg of trileptal so I don't know what does really work.... In fact, I tried trileptal again ( we tried it a long time ago but because Nath had had a trombopenia with tegretol, doctors didn't want to try it, it's the same family) because I've read the case of your daughter... You're right when you say this group helps and it's my only way to sort it out. And does Trileptal still good for Shan? Thank you Carolyn, mom to aël Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Claire is also on Trileptal at night. In April she was having generalised seizures many times all night, every night. The benzo drugs she was given to try to stop these clusters made her seizures worse and she could barely function. Since we got the timing of the Trileptal in relation to her bedtime right, she has not had a seizure in 9 weeks and is making tremendous gains. We too were told Trileptal would not work and that it had to be taken twice a day and at a much larger dose. Claire has been on the diet for 2years 9 months and started the Trileptal 3 months ago. Jill At 06:18 AM 7/08/2004, you wrote: >Carolyn, > >The 225mg of Trileptal at night definitely helps Shan. If she misses a dose >she will have seizures during the night. She use to be on Tegretol. >During the first 6 months of the diet we weaned her completely off. With >the last dose drop the seizures came back very bad. Over 3 weeks they >progressively got worse and Shan's life began to deteriorate to the point >her left side was nearly paralysed (left arm was paralysed). When we gave >back the small dose of Tegretol everything improved immediately and kept >getting better. We switched over to Trileptal and have stayed with the 225mg >dose. About 6 months ago when the seizures were increasing we increased the >trileptal to see if it would help. It did not help and we went back to >225mg. What helped was tweaking the diet. Shan has been on the 225mg >Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 >others on this list have tried the trileptal at night only and are having >success. I'm guessing that the Trileptal is the reason ael's seizures >have improved. 225mg is an extremely low dose and its half life is bout 7 >hours. I have been so thankful that this small dose with little or no side >effects has been such a great help to Shan and others. Unfortunately, >neurologists seem to not be aware that the drug can help in this way. It >took us being willing to experiment even though the neurologist said it >would not work. > >Hoping ael continues to have better days. > >Rhonda > > > > > Rhonda, > > aël is a little better since I reorganize the diet from last tuesday >but at the same time I put 225 mg of trileptal so I don't know what does >really work.... > In fact, I tried trileptal again ( we tried it a long time ago but because >Nath had had a trombopenia with tegretol, doctors didn't want to try it, >it's the same family) because I've read the case of your daughter... > You're right when you say this group helps and it's my only way to sort it >out. > And does Trileptal still good for Shan? > > Thank you > Carolyn, mom to aël > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Claire is also on Trileptal at night. In April she was having generalised seizures many times all night, every night. The benzo drugs she was given to try to stop these clusters made her seizures worse and she could barely function. Since we got the timing of the Trileptal in relation to her bedtime right, she has not had a seizure in 9 weeks and is making tremendous gains. We too were told Trileptal would not work and that it had to be taken twice a day and at a much larger dose. Claire has been on the diet for 2years 9 months and started the Trileptal 3 months ago. Jill At 06:18 AM 7/08/2004, you wrote: >Carolyn, > >The 225mg of Trileptal at night definitely helps Shan. If she misses a dose >she will have seizures during the night. She use to be on Tegretol. >During the first 6 months of the diet we weaned her completely off. With >the last dose drop the seizures came back very bad. Over 3 weeks they >progressively got worse and Shan's life began to deteriorate to the point >her left side was nearly paralysed (left arm was paralysed). When we gave >back the small dose of Tegretol everything improved immediately and kept >getting better. We switched over to Trileptal and have stayed with the 225mg >dose. About 6 months ago when the seizures were increasing we increased the >trileptal to see if it would help. It did not help and we went back to >225mg. What helped was tweaking the diet. Shan has been on the 225mg >Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 >others on this list have tried the trileptal at night only and are having >success. I'm guessing that the Trileptal is the reason ael's seizures >have improved. 225mg is an extremely low dose and its half life is bout 7 >hours. I have been so thankful that this small dose with little or no side >effects has been such a great help to Shan and others. Unfortunately, >neurologists seem to not be aware that the drug can help in this way. It >took us being willing to experiment even though the neurologist said it >would not work. > >Hoping ael continues to have better days. > >Rhonda > > > > > Rhonda, > > aël is a little better since I reorganize the diet from last tuesday >but at the same time I put 225 mg of trileptal so I don't know what does >really work.... > In fact, I tried trileptal again ( we tried it a long time ago but because >Nath had had a trombopenia with tegretol, doctors didn't want to try it, >it's the same family) because I've read the case of your daughter... > You're right when you say this group helps and it's my only way to sort it >out. > And does Trileptal still good for Shan? > > Thank you > Carolyn, mom to aël > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Claire is also on Trileptal at night. In April she was having generalised seizures many times all night, every night. The benzo drugs she was given to try to stop these clusters made her seizures worse and she could barely function. Since we got the timing of the Trileptal in relation to her bedtime right, she has not had a seizure in 9 weeks and is making tremendous gains. We too were told Trileptal would not work and that it had to be taken twice a day and at a much larger dose. Claire has been on the diet for 2years 9 months and started the Trileptal 3 months ago. Jill At 06:18 AM 7/08/2004, you wrote: >Carolyn, > >The 225mg of Trileptal at night definitely helps Shan. If she misses a dose >she will have seizures during the night. She use to be on Tegretol. >During the first 6 months of the diet we weaned her completely off. With >the last dose drop the seizures came back very bad. Over 3 weeks they >progressively got worse and Shan's life began to deteriorate to the point >her left side was nearly paralysed (left arm was paralysed). When we gave >back the small dose of Tegretol everything improved immediately and kept >getting better. We switched over to Trileptal and have stayed with the 225mg >dose. About 6 months ago when the seizures were increasing we increased the >trileptal to see if it would help. It did not help and we went back to >225mg. What helped was tweaking the diet. Shan has been on the 225mg >Trileptal for about 2years (been on the diet for over 2.5 years). One or 2 >others on this list have tried the trileptal at night only and are having >success. I'm guessing that the Trileptal is the reason ael's seizures >have improved. 225mg is an extremely low dose and its half life is bout 7 >hours. I have been so thankful that this small dose with little or no side >effects has been such a great help to Shan and others. Unfortunately, >neurologists seem to not be aware that the drug can help in this way. It >took us being willing to experiment even though the neurologist said it >would not work. > >Hoping ael continues to have better days. > >Rhonda > > > > > Rhonda, > > aël is a little better since I reorganize the diet from last tuesday >but at the same time I put 225 mg of trileptal so I don't know what does >really work.... > In fact, I tried trileptal again ( we tried it a long time ago but because >Nath had had a trombopenia with tegretol, doctors didn't want to try it, >it's the same family) because I've read the case of your daughter... > You're right when you say this group helps and it's my only way to sort it >out. > And does Trileptal still good for Shan? > > Thank you > Carolyn, mom to aël > Quote Link to comment Share on other sites More sharing options...
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