benign rolandic epilepsy

Hi my daughter had her first seizure march 2010.  she was 6at the time.  (she is 8 now, 2012) 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.