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benign rolandic epilepsy
Fri, 07/07/2006 - 11:43Topic: New to Epilepsy.com
My son has been diagnosed with Benign Rolandic Epilepsy.
He is 8 years old. He has only had seizures in his sleep and they have all been within the 1st 20 to 30 minutes of falling asleep. He has only had 6 since Dec. 2003 but within the last 2 1/2 weeks he has had 3. They are pretty scary. They only last less than a minute or so but he drools alot and is unconscious during them. Just wondering if anyone has any experience with this. Also we are not on any medications right now because our doctor says this type of epilepsy is not always treated because kids usually grow out of it at adolescents.
Comments
Re: Re: benign rolandic epilepsy
Submitted by KSnods on Mon, 2006-08-28 - 23:42
To Medicate or Not (BRE)
I just read your "story" and it sounded like I wrote it. Our story is identical. It's actually comforting to hear similar stories. Our son, now 9 1/2 had his first seizure (Grand Mal) 1 hour after he fell asleep last October. The second was in March. Then he had 3 (aka "cluster) in July / August over 3 weeks... with 2 which were 5 days apart. All are 45 - 70 minutes after he goes to sleep. They vary in intensity but are less than 5 minutes. The first one I thought he was choking to death as well... it was the worst as he turned blue, it lasted a little over 5 minutes and we had NO idea what it was! We see a Pedatric Neurologist (Palo Alto, CA). He has been diagnosed with BRE (based on EEG and symptoms). We have chosen not to medicate. Following the "cluster" we returned to Neurologist - still determined not to medicate. She has suggested that if the current "pattern" continues then we should consider medicating. In general, she wasn't in favor if they were infrequent but if a few a month... then she thinks we should. Tomorrow will be 4 weeks seizure free so we are hoping that was a cluster and that they will be infrequent again and therefore no medication. However, there are times (like now as I am waiting for the 1 hour to pass and feel like neuorotic Mom cuz my husband is on business trip) that I think it would make me less neurotic if he was on meds. My sons seizures are identical to your daughter. You can email if you want to "chat" more.
Scared Mom
Re: Re: Re: benign rolandic epilepsy
Submitted by basura on Mon, 2006-09-04 - 12:13
Our story sounds very , very similar to yours. We too have chosen at this time not to medicate. We too feel very nerveous about putting our son to bed at night and it is almost like we breathe a sigh of relief after he has been asleep for about an hour. Thankfully , after our cluster of seizures in June/ July our son has not had a seizure since july 3. We just continue to pray and are trusting the Lord for his healing and safety. Hope your son will be better as well. We have been told he should grow out of this by early adolescense. Is that what they have told you?
Re: Re: Re: benign rolandic epilepsy
Submitted by christine2 on Sat, 2006-07-22 - 06:32
My daughter has been on medication now for a few nights and hasn't had any more seizures or side effects of the medication, so far. She is on clobazam, which is a benzodiazepine and "normally" used as an adjunct therapy to other AEDs. She takes it just before bedtime as her vulnerable seizure time is within an hour of falling asleep. I have read many scientific articles on BRE and medications (from Brain, Brain Development, Epilepsia), and questioned the need to treat to her neurologist, but he indicated that it was standard to treat after a certain number of cluster seizures (several seizures over a short period of time). Doctors generally hate for parents of patients to question or challenge their medical opinions. I am afraid of her seizures progressing to something worse, like a generalized tonic-clonic seizure. I will watch to see if any side effects occur, such as daytime tireness and dizziness, and will return to the neurologist if this happens. I believe that he intends a short-term treatment, about a year. Standard AED treatment seems to be 2 years these days.