Hello,
I'm new here, but have been dealing with epilepsy for a little over a year now.
In September of 2010, my son (then 6), was diagnosed with Benign Rolandic Epilepsy. Our intent was to avoid medication, but his second and third seizures were both extended and required rescue medication so we medicated. He's currently on Trileptal which makes him VERY sleepy. He had a brief breakthrough seizure this weekend. I'm hesitant to notify neurology because I'm afraid they'll want to increase the dosage which already wipes him out ( he cries a lot, is easily frustrated, and will sleep over 12 hours on weekends). I'm frustrated with the care he's getting. We see a nurse practitioner rather than a doctor (not my choice), and if there's a question, I get a nurse call-back, and she'll talk to the nurse practitioner who may then talk to the doctor and the doctor's advise will be relayed to a nurse who will call me back- it's all very impersonal and time consuming... I'd LOVE to find an expert in Benign Rolandic Epilepsy to know exactly what the best practice methods for treating this is. Does anyone know of an expert in this field?
I'm new here, but have been dealing with epilepsy for a little over a year now.
In September of 2010, my son (then 6), was diagnosed with Benign Rolandic Epilepsy. Our intent was to avoid medication, but his second and third seizures were both extended and required rescue medication so we medicated. He's currently on Trileptal which makes him VERY sleepy. He had a brief breakthrough seizure this weekend. I'm hesitant to notify neurology because I'm afraid they'll want to increase the dosage which already wipes him out ( he cries a lot, is easily frustrated, and will sleep over 12 hours on weekends). I'm frustrated with the care he's getting. We see a nurse practitioner rather than a doctor (not my choice), and if there's a question, I get a nurse call-back, and she'll talk to the nurse practitioner who may then talk to the doctor and the doctor's advise will be relayed to a nurse who will call me back- it's all very impersonal and time consuming... I'd LOVE to find an expert in Benign Rolandic Epilepsy to know exactly what the best practice methods for treating this is. Does anyone know of an expert in this field?
