Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 My Molly has just been diagnosed with petit mal seizures and was wondering if anyone has any advice for me. The weird part for us is that Cohen said that these kinds of seizures are not the kind normally indicative in mito-which means they are not related? Weird. She has been put on Keppra-anyone use this? Thanks, Dawn M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 My Molly has just been diagnosed with petit mal seizures and was wondering if anyone has any advice for me. The weird part for us is that Cohen said that these kinds of seizures are not the kind normally indicative in mito-which means they are not related? Weird. She has been put on Keppra-anyone use this? Thanks, Dawn M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Dawn, and Lindsey have been on Keppra for over two years. It's is a very safe drug with few side effects. Our neuro is really pushing this med with the girls. They are on a total of 1500mg per day. (They weigh 30 pounds.) What do Molly's seizures look like? I hope Keppra does the trick for her. Good luck! Kim - Mom to and Lindsey (3) Partial Complex I seizures help > > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Dawn, and Lindsey have been on Keppra for over two years. It's is a very safe drug with few side effects. Our neuro is really pushing this med with the girls. They are on a total of 1500mg per day. (They weigh 30 pounds.) What do Molly's seizures look like? I hope Keppra does the trick for her. Good luck! Kim - Mom to and Lindsey (3) Partial Complex I seizures help > > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Kim, Her seizures are pretty mild... eyes rolling back, unresponsive, eyes fluttering-short. But before three weeks ago she had no evidence of any so I worry about where they will progress. She is 38 lbs and will be on 200mg bid within two weeks so it seems as though it is a pretty low dose?!?. What kind of seizures do the girls have? Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Kim, Her seizures are pretty mild... eyes rolling back, unresponsive, eyes fluttering-short. But before three weeks ago she had no evidence of any so I worry about where they will progress. She is 38 lbs and will be on 200mg bid within two weeks so it seems as though it is a pretty low dose?!?. What kind of seizures do the girls have? Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Asenath also has mostly petit mals. After her April 2002 stroke with damaged her basal ganglia and surrounding brain tissues, she began having them. She has been on Topamax and it has worked wonderful. She was on a higher level when younger than presently as they are better controlled lately. Her petit mals are mostly staring off into space for a time and then often after them becoming hyperactive. Often they occur in clusters and make her become quite " la la landish " if too many happen in a 24 hour period. I don't know if they are a norm for Mito or not, but I think they are common with strokes. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) seizures help > > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Asenath also has mostly petit mals. After her April 2002 stroke with damaged her basal ganglia and surrounding brain tissues, she began having them. She has been on Topamax and it has worked wonderful. She was on a higher level when younger than presently as they are better controlled lately. Her petit mals are mostly staring off into space for a time and then often after them becoming hyperactive. Often they occur in clusters and make her become quite " la la landish " if too many happen in a 24 hour period. I don't know if they are a norm for Mito or not, but I think they are common with strokes. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) seizures help > > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Dawn, Wyatt was on Keppra for two years. He started to have breakthrough seizures and we switched to lamictal. Keppra is very safe,no side affects for Wyatt. Don't worry about the seizures changing or coming on strong, they may not. I know easier said then done. Hopefully when you get up to theraputic level you will see a stop in the seizures. Happy Holidays! Geri-Anne and Wyatt -- In Mito , " thefourofus03 " <thefourofus03@y...> wrote: > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Dawn, Wyatt was on Keppra for two years. He started to have breakthrough seizures and we switched to lamictal. Keppra is very safe,no side affects for Wyatt. Don't worry about the seizures changing or coming on strong, they may not. I know easier said then done. Hopefully when you get up to theraputic level you will see a stop in the seizures. Happy Holidays! Geri-Anne and Wyatt -- In Mito , " thefourofus03 " <thefourofus03@y...> wrote: > > My Molly has just been diagnosed with petit mal seizures and was > wondering if anyone has any advice for me. The weird part for us is > that Cohen said that these kinds of seizures are not the kind > normally indicative in mito-which means they are not related? Weird. > > She has been put on Keppra-anyone use this? > > Thanks, Dawn M Quote Link to comment Share on other sites More sharing options...
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