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benign rolandic epilepsy
Thu, 02/02/2012 - 22:31Hi my daughter had her first seizure march 2010. she showed me that her jaw was "locking up" and shaking. she had many of these and my family dr didn't know what to make of it. they sent me to the dentist. which sent me to the oral surgeon then onto the orthodontist. everyone said that it was because of her grinding her teeth. then one day as we were sleeping in the same bed i woke up to her kicking me repeatitly. she was having a grand mal seizure. i took her to the family dr that day and they still didn't believe me that something was really wrong!! they said that maybe her jaw was over active that night!!! i refused to leave without a neuro dr phone number. my daughter had an eeg and was dignosed with bre. at the time i didn't medicate i wanted to try to control with making sure she got enough sleep. that plan evently did not work out. she had another grand mal seizure and i eventaully had to come to terms with giving her meds.
she was on triliptal generic form for at least a year now. she was getting 2 dosages every day. she still had 3-4 facial seizures a month. mostly first thing in the morning. then they started happening later during school. we then spread the doses to 3 times a day. since then she didn't go a full month without having at least 1.
now this past month she has gone down hill. in the last 14 days she has had at least 15 facial seizures. now not all of them have been witnessed. she does have a sinus infection and is on her second round of antibiotics, which can effect her threshold for seizures i am told. we have also started her on keppra and will be weaning her off of the triliptal. she is scheduled for an mri on 2/17. her neuro feels that a) her bre is just acting up (which i get) and her triliptal is not working anymore or b) there is another reason that the seizures are now changing to during the day and none at night- there is something in the brain causing it ex. extra tissue or a vessel.
as far as school goes she has been sent home 4 days and i didn't send her 3 days out of the last 10. the school is not comfortable with having her there with so many happening. the drs plan is to give diastat if she has 2 or more seizures within 30 minutes. she then would have to come home. i did have to give her diastat last night on drs orders. i guess my big question is has anyone else had anything like this? i would love to hear from anyone who has had an experience simialar to ours.
Comments
Re: benign rolandic epilepsy
Submitted by jdw1343 on Tue, 2012-10-16 - 10:15
Hi I am so sorry that I did not comment back. I lost my password and could not figure out how to get back on:( It has been a few months and I am really courious about how you have made out with your daughter. What happened with the Oxcarbezapine? Did you get her blood levels checked? I am courious because that is what our first dr did she upped the meds all of the time without sending us for blood work. And when I questioned her she told me that it was not nessasry. she was also the one who told me to use diastat on my daughter if she had 2 or more seizures in 30 minutes even if it was everyday she would just write a new script. needless to say we have a new dr:) Has your daughter had anymore daytime issues? My daughter is now on keppra and we had to up her dosage last week for more facial seizures. But let me tell you the keppra causes such mood swings until it levels out for her. it is really hard. She did have 2 grand mals over the summer and possibly 1 last week but i did not see it but what she described it was. I must say that I am tired of feeling that at any moment the other shoe will drop. When I wrote my first post i had this same feeling and it took months to get back to center for me. we have her eeg and nuero appt the begining of november. at the last meeting the dr said we would talk about weaning her off of meds but now we are upping them so i guess that conversation will have to wait:( oh and this new dr has dignoised her with ADD where i think she has absence seizures but put her on ritalin because that is what the dr wanted. i really don't like ritalin but can only fight 1 battle at a time. oh and i don't know where you are from but my daughter went to a summer camp run by the epilepsy foundation of eastern pennsylvania. it was a sleep away camp run by drs and the foundation. she had such a good time and met other kids the same age that deal with epilepsy. she loved it so much that she cried a few weeks later saying she never wants to stop having seizures because she wants to go to camp every year! never thought i would hear that coming out of her. I hope to hear from you again, and i wrote my password down so i can respond back. Thinking of you and hope all is better:)
Hi I am so sorry that I did not comment back. I lost my password and could not figure out how to get back on:( It has been a few months and I am really courious about how you have made out with your daughter. What happened with the Oxcarbezapine? Did you get her blood levels checked? I am courious because that is what our first dr did she upped the meds all of the time without sending us for blood work. And when I questioned her she told me that it was not nessasry. she was also the one who told me to use diastat on my daughter if she had 2 or more seizures in 30 minutes even if it was everyday she would just write a new script. needless to say we have a new dr:) Has your daughter had anymore daytime issues? My daughter is now on keppra and we had to up her dosage last week for more facial seizures. But let me tell you the keppra causes such mood swings until it levels out for her. it is really hard. She did have 2 grand mals over the summer and possibly 1 last week but i did not see it but what she described it was. I must say that I am tired of feeling that at any moment the other shoe will drop. When I wrote my first post i had this same feeling and it took months to get back to center for me. we have her eeg and nuero appt the begining of november. at the last meeting the dr said we would talk about weaning her off of meds but now we are upping them so i guess that conversation will have to wait:( oh and this new dr has dignoised her with ADD where i think she has absence seizures but put her on ritalin because that is what the dr wanted. i really don't like ritalin but can only fight 1 battle at a time. oh and i don't know where you are from but my daughter went to a summer camp run by the epilepsy foundation of eastern pennsylvania. it was a sleep away camp run by drs and the foundation. she had such a good time and met other kids the same age that deal with epilepsy. she loved it so much that she cried a few weeks later saying she never wants to stop having seizures because she wants to go to camp every year! never thought i would hear that coming out of her. I hope to hear from you again, and i wrote my password down so i can respond back. Thinking of you and hope all is better:)
Re: benign rolandic epilepsy
Submitted by tripletmom on Wed, 2012-04-18 - 14:12
My 10 yo daughter, who was diasgnosed with BRE 2 years ago, is going through similar experiences. Her seizures started as grand mal nocturnal, only happening while asleep. She has has 1 facial seizure like you describe, she couldn't talk and became upset, this happened while she was awake. She avg's maybe 2-3 grand mal nocturnals a year. This past Friday, the game changed. She had several episodes of severe left leg pain that lasted a minute, would stop, then reaccur after 5-10 minutes. This went on for about an hour. She also has some unusual bruising on this leg...maybe a reaction to the Oxcarbezapine ( trileptal generic that she is taking ) so we are waiting to get blood work results to determine that. The episodes Friday were so different than any other seizure that she has had, it's scary. Our neuro wants me to increase her dose today, which I refused until I have a chance to speak with her directly, as my daughter is having severe academic issues that could also be caused by this medicine. I am so confused because I thought that BRE was only nocturnal seizures. I'm also concerned because this episode lasted for an hour. I'm waiting for the neuro to call me back now to schedule an appt. Our school is nervous about her being there, if she starts having seizures when she is awake we may have to home school her, as she is already struggling academically and this will further complicate all of these issues.
I have no answers for you, just a cyber hug of understanding. It's so frustrating, and frightening.
My 10 yo daughter, who was diasgnosed with BRE 2 years ago, is going through similar experiences. Her seizures started as grand mal nocturnal, only happening while asleep. She has has 1 facial seizure like you describe, she couldn't talk and became upset, this happened while she was awake. She avg's maybe 2-3 grand mal nocturnals a year. This past Friday, the game changed. She had several episodes of severe left leg pain that lasted a minute, would stop, then reaccur after 5-10 minutes. This went on for about an hour. She also has some unusual bruising on this leg...maybe a reaction to the Oxcarbezapine ( trileptal generic that she is taking ) so we are waiting to get blood work results to determine that. The episodes Friday were so different than any other seizure that she has had, it's scary. Our neuro wants me to increase her dose today, which I refused until I have a chance to speak with her directly, as my daughter is having severe academic issues that could also be caused by this medicine. I am so confused because I thought that BRE was only nocturnal seizures. I'm also concerned because this episode lasted for an hour. I'm waiting for the neuro to call me back now to schedule an appt. Our school is nervous about her being there, if she starts having seizures when she is awake we may have to home school her, as she is already struggling academically and this will further complicate all of these issues.
I have no answers for you, just a cyber hug of understanding. It's so frustrating, and frightening.