Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 I was wondering if all mito kids are epileptic? My son has microcephaly which means his brain/head stopped growing between 4-6 months of age. The docs think that a mitochondrial disorder could have caused that. I know alot of kids with microcephaly have seizure disorders but what about mito disorders itself? I guess I'm asking to get an idea of what to expect. had his first seizure around age 2(grand-mal type). It took awhile to get the seizures under control but they finally were--at least for awhile. He has been having more breakthroughs this year. had his last breakthroughs of seizures last month. He has clusters of them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4 hours, have another seizure, sleep for 3-4 hours...you get the idea. This pattern continues until we give him Diastat(rectal valium) which knocks him out for the rest of the day. He'll then wake up 6 hours later with no more seizures. He had one cluster of seizures a week for 3 consecutive weeks. I took him for a routine EEG at the hospital a few weeks ago. Chris seemed perfectly fine and full of energy. But they consulted Chris's neuro and then Chris(and Mommy) was admitted to the Epilepsy Center for overnight observation. They had me freaked out because he was so happy and bubbly and they were saying he was having seizures. To keep the story short, they released us the next evening stating that he wasn't having seizures. They said that his brain wave was abnormal but apparently it WAS normal for him. Has anyone else had this experience? I'm glad he's not having seizures but I'm still concerned about the abnormal brain waves that no one has sufficiently explained to me. I know his brain is small and he has severe developmental delays but the docs can't explain why his pattern looks the way it does. I guess I'm concerned because any time gets one thing under control then another body system will throw him a curve- first his muscles and vision, then GI issues, then seizures, then respiratory problems. Whenever things are going well another problem will crop up. Has anyone experienced this-not just with seizures? I'm not as frustrated as I might sound. I'm actually very calm about things. A couple years ago I was highly frustrated but I've had to learn to deal with things and accept them as they are. I'm just trying to find out what to expect(If that's possible) Sorry for the ramble. Time for more coffee:) Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 I was wondering if all mito kids are epileptic? My son has microcephaly which means his brain/head stopped growing between 4-6 months of age. The docs think that a mitochondrial disorder could have caused that. I know alot of kids with microcephaly have seizure disorders but what about mito disorders itself? I guess I'm asking to get an idea of what to expect. had his first seizure around age 2(grand-mal type). It took awhile to get the seizures under control but they finally were--at least for awhile. He has been having more breakthroughs this year. had his last breakthroughs of seizures last month. He has clusters of them. He'll have a grand-mal(clonic/tonic) seizure, sleep for 3-4 hours, have another seizure, sleep for 3-4 hours...you get the idea. This pattern continues until we give him Diastat(rectal valium) which knocks him out for the rest of the day. He'll then wake up 6 hours later with no more seizures. He had one cluster of seizures a week for 3 consecutive weeks. I took him for a routine EEG at the hospital a few weeks ago. Chris seemed perfectly fine and full of energy. But they consulted Chris's neuro and then Chris(and Mommy) was admitted to the Epilepsy Center for overnight observation. They had me freaked out because he was so happy and bubbly and they were saying he was having seizures. To keep the story short, they released us the next evening stating that he wasn't having seizures. They said that his brain wave was abnormal but apparently it WAS normal for him. Has anyone else had this experience? I'm glad he's not having seizures but I'm still concerned about the abnormal brain waves that no one has sufficiently explained to me. I know his brain is small and he has severe developmental delays but the docs can't explain why his pattern looks the way it does. I guess I'm concerned because any time gets one thing under control then another body system will throw him a curve- first his muscles and vision, then GI issues, then seizures, then respiratory problems. Whenever things are going well another problem will crop up. Has anyone experienced this-not just with seizures? I'm not as frustrated as I might sound. I'm actually very calm about things. A couple years ago I was highly frustrated but I've had to learn to deal with things and accept them as they are. I'm just trying to find out what to expect(If that's possible) Sorry for the ramble. Time for more coffee:) Blessings, Quote Link to comment Share on other sites More sharing options...
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