Rolandic Epilepsy

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My daughter had her first seizure on January 29, 2014, age 9, diagnosed with Rolandinc Epilepsy of Childhood. She was seizure free for 3 1/2 months until May 16 she had another one and continue to have one once a week. We are lucky that her seizure only happens during falling asleep but still worries me if having seizure once a week is normal. The neuro do not suggest us going on medication, but i am worried that more seizures may do some scarring to her brain. Is there anyone out there that have good stories or outcome about Rolandic Epilepsy of Childhood. I have been doing a lot of searching on internet but I get more frigntened.

Comments

If she was seizure free for a

Submitted by just_joe on Fri, 2014-06-13 - 21:01

If she was seizure free for a period of time and she wasn't taking medications and now she has been having seizures and her neurologist has nor prescribed medications then you might want to see another neurologist. If she was diagnosed then she has epilepsy. If she is having seizures then the doctor should be talking about procedures,medications and dosages which should stop or control her seizures. As for having her seizures during falling asleep but still worries me Mothers worry all the time but I understand where you are comming from. After she is asleep she could also be having seizures which you might not see or know about. As mereloaded said always communicate with your neuro or his office. I have done that for years and had many questions answered with my calls. Some of those were about new medications or dosages. Aks your questions and others because most doctors ask a few questions and make their diagnosis. I always answer my neurologists questions and with that answer I ask questions. What is the next step for our daughter? Why haven't you prescribed a medications yet? What other procedures can she get that will stop the seizures? You might want to look at the my epilepsy diary on this site. Watch the video which tells you how to use it and other things. You can give your neuro permission to bring it up so he can see the graphs and other things which can help him with different procedures dosages and medications/ Like mereloaded said I too am no doctor but if she is having seizures now without medications those seizures could generalize and become worse then they are now. . The internet can get scary and in other ways there are people like mereloaded and others at this site who have research to get answers or are like me who speak from experiance we have gone thru. I too have been researching and I also found this type of epilepsy happens to about 15% of the kids with epilepsy. Benign rolandic epilepsy or benign childhood epilepsy with centrotemporal spikes (BCECTS) is the most common epilepsy syndrome in childhood. Most children will outgrow the syndrome (it starts around the age of 3-13 with a peak around 8–9 years and stops around age 14-18), hence the label benign. The seizures, sometimes referred to as sylvian seizures, start around the central sulcus of the brain (also called the centrotemporal area, located around the Rolandic fissure. This might have been the kind of epilepsy my cousin had but that was back in the 1970's prior to specializations. Discuss your issues and ask questions. Most of your questions can be answered over the phone or if the neuro thinks you need more information he will set up an appoointment

If she was seizure free for a period of time and she wasn't taking medications and now she has been having seizures and her neurologist has nor prescribed medications then you might want to see another neurologist. If she was diagnosed then she has epilepsy. If she is having seizures then the doctor should be talking about procedures,medications and dosages which should stop or control her seizures.  As for having her seizures during falling asleep but still worries me Mothers worry all the time but I understand where you are comming from. After she is asleep she could also be having seizures which you might not see or know about.  As mereloaded said always communicate with your neuro or his office. I have done that for years and had many questions answered with my calls. Some of those were about new medications or dosages.  Aks your questions and others because most doctors ask a few questions and make their diagnosis. I always answer my neurologists questions and with that answer I ask questions. What is the next step for our daughter? Why haven't you prescribed a medications yet? What other procedures can she get that will stop the seizures?  You might want to look at the my epilepsy diary on this site. Watch the video which tells you how to use it and other things. You can give your neuro permission to bring it up so he can see the graphs and other things which can help him with different procedures dosages and medications/  Like mereloaded said I too am no doctor but if she is having seizures now without medications  those seizures could generalize and become worse then they are now. . The internet can get scary and in other ways there are people like mereloaded and others at this site who have research to get answers or are like me who speak from experiance we have gone thru. I too have been researching and I also found this type of epilepsy happens to about 15% of the kids with epilepsy. Benign rolandic epilepsy or benign childhood epilepsy with centrotemporal spikes (BCECTS) is the most common epilepsy syndrome in childhood. Most children will outgrow the syndrome (it starts around the age of 3-13 with a peak around 8–9 years and stops around age 14-18), hence the label benign. The seizures, sometimes referred to as sylvian seizures, start around the central sulcus of the brain (also called the centrotemporal area, located around the Rolandic fissure. This might have been the kind of epilepsy my cousin had  but that was back in the 1970's prior to specializations. Discuss your issues and ask questions. Most of your questions can be answered over the phone or if the neuro thinks you need more information he will set up an appoointment

If she was seizure free for a period of time and she wasn't taking medications and now she has been having seizures and her neurologist has nor prescribed medications then you might want to see another neurologist. If she was diagnosed then she has epilepsy. If she is having seizures then the doctor should be talking about procedures,medications and dosages which should stop or control her seizures. As for having her seizures during falling asleep but still worries me Mothers worry all the time but I understand where you are comming from. After she is asleep she could also be having seizures which you might not see or know about. As mereloaded said always communicate with your neuro or his office. I have done that for years and had many questions answered with my calls. Some of those were about new medications or dosages. Aks your questions and others because most doctors ask a few questions and make their diagnosis. I always answer my neurologists questions and with that answer I ask questions. What is the next step for our daughter? Why haven't you prescribed a medications yet? What other procedures can she get that will stop the seizures? You might want to look at the my epilepsy diary on this site. Watch the video which tells you how to use it and other things. You can give your neuro permission to bring it up so he can see the graphs and other things which can help him with different procedures dosages and medications/ Like mereloaded said I too am no doctor but if she is having seizures now without medications those seizures could generalize and become worse then they are now. . The internet can get scary and in other ways there are people like mereloaded and others at this site who have research to get answers or are like me who speak from experiance we have gone thru. I too have been researching and I also found this type of epilepsy happens to about 15% of the kids with epilepsy. Benign rolandic epilepsy or benign childhood epilepsy with centrotemporal spikes (BCECTS) is the most common epilepsy syndrome in childhood. Most children will outgrow the syndrome (it starts around the age of 3-13 with a peak around 8–9 years and stops around age 14-18), hence the label benign. The seizures, sometimes referred to as sylvian seizures, start around the central sulcus of the brain (also called the centrotemporal area, located around the Rolandic fissure. This might have been the kind of epilepsy my cousin had but that was back in the 1970's prior to specializations. Discuss your issues and ask questions. Most of your questions can be answered over the phone or if the neuro thinks you need more information he will set up an appoointment

Rolandic Epilepsy

Comments

If she was seizure free for a

Submitted by just_joe on Fri, 2014-06-13 - 21:01

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