Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
benign rolandic epilepsy
Fri, 07/07/2006 - 11:43Comments
Re: benign rolandic epilepsy
Submitted by cspin on Mon, 2008-05-12 - 13:55
I can't believe I found this site. My daughter, now 7, had her first seizure a little over a year ago. We just returned from a week's vacation. Her ears hurt her tremendously on the plane. She had never had issues before. She ended up falling asleep instantly before getting off the plane. I carried her off the plane and held her while my husband got the luggage. Right there in my arms, she began to seizure. Her eyes were wide open flickerly, her body stiff and moving...horrible. As a mother, I was so scared I stood there shaking as though I was having the seizure. We had no idea what was going on and thought she was dying after seeing this seizure last for four minutes and over.
We saw a neurologist and just took this as a one time occurance. Despite that diagnosis, she had another one. She had two EEG's done which told us she has BRE. The second EEG set off another bad seizure. Even though she has had close to twenty seizures in the past year, we have chosen to not medicate her. We are aware it's a choice and it's so hard to know what is best. We did try it for two months last summer before school. We noticed the difference in her with school work. It may have been the more difficult cirriculum this year but really worried what the medication was doing to her. So she is still not on it.
I talk to friends and family but I feel so alone when I think of the "sleep overs" that will eventually occur with the classmates. My daughter's seizures happen around 30-40 minutes after she goes to sleep. She doesn't even know she's having them! We don't want to worry her, so we don't even tell her. There is no point at this time. However, there will be a time when we will have to explain. I worry about stressing her out about it and not being able to go to sleep overs. Children can be mean and I fear the wrong one may see one someday. This forum is amazing and I felt such relief to see I am not alone in how I think.
P.S. She had a seizure one night when she had a cold. Her nose was so stuffed up. During this particular seizure, her tongue came out of her mouth. I was soooo scared she could not breathe and felt so helpless watching her. My neurolgist confirmed that anatomically they cannot suffocate themselves and the human body is amazing. So we didn't need to worry about that part (easier said than done).
I can't believe I found this site. My daughter, now 7, had her first seizure a little over a year ago. We just returned from a week's vacation. Her ears hurt her tremendously on the plane. She had never had issues before. She ended up falling asleep instantly before getting off the plane. I carried her off the plane and held her while my husband got the luggage. Right there in my arms, she began to seizure. Her eyes were wide open flickerly, her body stiff and moving...horrible. As a mother, I was so scared I stood there shaking as though I was having the seizure. We had no idea what was going on and thought she was dying after seeing this seizure last for four minutes and over.
We saw a neurologist and just took this as a one time occurance. Despite that diagnosis, she had another one. She had two EEG's done which told us she has BRE. The second EEG set off another bad seizure. Even though she has had close to twenty seizures in the past year, we have chosen to not medicate her. We are aware it's a choice and it's so hard to know what is best. We did try it for two months last summer before school. We noticed the difference in her with school work. It may have been the more difficult cirriculum this year but really worried what the medication was doing to her. So she is still not on it.
I talk to friends and family but I feel so alone when I think of the "sleep overs" that will eventually occur with the classmates. My daughter's seizures happen around 30-40 minutes after she goes to sleep. She doesn't even know she's having them! We don't want to worry her, so we don't even tell her. There is no point at this time. However, there will be a time when we will have to explain. I worry about stressing her out about it and not being able to go to sleep overs. Children can be mean and I fear the wrong one may see one someday. This forum is amazing and I felt such relief to see I am not alone in how I think.
P.S. She had a seizure one night when she had a cold. Her nose was so stuffed up. During this particular seizure, her tongue came out of her mouth. I was soooo scared she could not breathe and felt so helpless watching her. My neurolgist confirmed that anatomically they cannot suffocate themselves and the human body is amazing. So we didn't need to worry about that part (easier said than done).
Re: benign rolandic epilepsy
Submitted by hopeforVictoria on Tue, 2008-06-24 - 14:33
Hello,
We have been dealing with this for about a year now. My daughter just recently switched to Keppra (was on Trileptal) she was at the highest dosage and still had seizures. She was held back last year do to learning problems. She is going into the 2nd grade for this school year. We thought she had some ADD tendencies and put her on Ritalin at the suggestion of the Neurologist. She had more seizures and we have taken her off the Ritalin. I have paid for a private tutor and put her in a reading class. She was exceptionally bright before the seizures and now she has lost alot of her ability to retain/recall from her memory. I have now changed jobs to be able to get her evaluated at a Center for Human Development. I have argued with the school to help her and test her. They again put this off until next year. They keep telling me she has a processing problem! I am a nurse and I still am uncomfortable when she has the seizures. I lay with her every night until I think she is over the 20-30 minute mark of having a seizure. It is a problem I can't control and I have tried to increase sleep time and told her she has to "listen to her body". I encourage naps during the day with her. She is at the highest dosage for her size and I think she had a seizure last night. Altho it was "minor" she only cleared her throat and swallowed. Prior to this she was seizure free (at least to my seeing symptoms) for 5 months. I can only hope she grows out of this and fast. I am afraid she will fall behind in school and not catch up.
Hello,
We have been dealing with this for about a year now. My daughter just recently switched to Keppra (was on Trileptal) she was at the highest dosage and still had seizures. She was held back last year do to learning problems. She is going into the 2nd grade for this school year. We thought she had some ADD tendencies and put her on Ritalin at the suggestion of the Neurologist. She had more seizures and we have taken her off the Ritalin. I have paid for a private tutor and put her in a reading class. She was exceptionally bright before the seizures and now she has lost alot of her ability to retain/recall from her memory. I have now changed jobs to be able to get her evaluated at a Center for Human Development. I have argued with the school to help her and test her. They again put this off until next year. They keep telling me she has a processing problem! I am a nurse and I still am uncomfortable when she has the seizures. I lay with her every night until I think she is over the 20-30 minute mark of having a seizure. It is a problem I can't control and I have tried to increase sleep time and told her she has to "listen to her body". I encourage naps during the day with her. She is at the highest dosage for her size and I think she had a seizure last night. Altho it was "minor" she only cleared her throat and swallowed. Prior to this she was seizure free (at least to my seeing symptoms) for 5 months. I can only hope she grows out of this and fast. I am afraid she will fall behind in school and not catch up.
Re: Re: benign rolandic epilepsy
Submitted by basura on Tue, 2006-07-18 - 17:53
Thanks so much for sharing. We did get our EEG result back and the doctor said that my son's EEG still does not show to be classic for BRE. He said the classic text book EEG would show spikes on both sides of the brain where as my son's are only showing on one side of the brain. He said that of course everyone is not text book. He is recommending that we start on Trileptal since he has had 3 seizures since July 3rd. We have opted to hold off right now and see if it happens again. I struggle so with the idea of medication because my son is so normal otherwise that, to me, I hate to take a chance of him having side effects and not being "normal". The other thing the doctor has told us is that sometimes with BRE you may see clusters of seizures and sometimes it seems to get worse before it goes away. We believe in prayer and so we have chosen for now to pray for healing or at least for peace about medication if necessary. As of right now we just do not have peace about it. Please contine sharing your stories with us as it is encouraging sometimes to hear others going thru the same or very similar situations