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UPDATED: Tue, 12/13/2005 - 2:44pm

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antcon
antcon

Benign Rolandic Epilepsey

I need to know if you think medication is necessary for BRE.  My son has had two bad seizures in the last two years and about 7 mild ones.  The neoro wants to place him on treleptal.   I don't know what to do and I am worried one of these bad seizures may really harm him.  Please help!!! Thanks

 

By antcon at Tue, 05/10/2005 - 4:36am | 1894 views | 15 comments

Recent Comments on this Discussion

Can you pls let me know how he is doing now ? My son had 2 mild seizures 2 years ago and we did not medicate - had nothing then for 2 years but now has just had 2 more We don't want to medicate but dont know what to do
Cather...

Was just on line and saw this forum. Our son who is now almost 9 has also been diagnosed with BRE although his EEG is not classic for it the doctor says his symptoms are. He has had 6 seizures since Dec.2003 when he was 6 years old. The last 3 were in a 2 1/2 week period recently. We are also not on medication at this time but after these last 3 episodes our doctor sts he is leaning more toward starting him on Trileptal. We also struggle with the idea of medicating because our son is perfectly normal during the day. All of his seizures have happend during sleep and within the first 20 minutes of sleep. We cringe at the thought of side effects of the medication. We are now praying for a miracle so that we don't have to use medication. How is your son's condition now?

basura

hi my son also has benign rolandic epilepsey, im not sure wether to medicate he has a seizure about once every 3 months,what was the outcome of yr son.

biscuits

I would be interested to know too. 

 My son had his first seizure a week after his 4th birthday last year.  3 months later he was diagnosed with BRE and I was told no medication was needed and that I just needed a follow up with my family Dr. only. 

He had 8 within a year's time, but then last month when he had a total of 7!  I finally got a referral from my family Dr. for a Child Neurologist and we are having another EEG done right before Christmas along with a check up.  The first neurologist told us we didn't need to do anything except wait for him to grow out of them.  The child neurologist said he should have been seeing them since last year. 

 Do you go to a child neurologist for your son's BRE?

My son will be 6 in February.

dfazg
Hello, My son was diagnosed with BRE just a couple of months ago. He was having seizures every night for 10 to 15 nights straight. This was really affecting his sleep and his ability to function well during the day. His grades started suffering. After months of waiting to get evals. and dr appts. he was finaly seen. At this point he had been going through this for about four months. His neurologist suggested we put him on Tegretol twice a day. We were concerned about him taking this medicine every day, but WOW what a difference! He has been seizure free since he started taking Tegretol. There has not been any negative side affects for him, and he feels much better. Hope this helps.~skwest
skwest

Try this site. It gives some info about BRE and "How is it treated?"

http://www.epilepsy.com/epilepsy/epilepsy_benignrolandic.html

It does mention and I sure hope that your son will be one of the cases, that "In almost every case, the seizures stop on their own by age 15."

Wish you the best.

Bruce

batman
I think you know this but there is no set answer to your question. Our son had one full seizure and a number of simple partial seizures when we made the deciaion to medicate. Yes, I have read that in some cases no medication is given for BRE but that means that in other cases medication is in order. The frequency and type of seizure becomes the basis of the decision. You didn't mention the age of your son -- ours was 7 at the time -- and he was certainly old enough to keep asking and worrying about what was wrong with him. The decision to medicate was as much to do with his frame of mind as it was about controling the seizures from a physiological standpoint.My wife and I agonized over the decision to medicate and during that time he had two more simple partial seizures, at which point we finally agreed to pull the trigger.Since November 2004, when we began the medication, he had one more simple partial seizure in December while we were balancing his dosage and none since. Our son's questions have changes from 'what is wrong with me' to 'why do I still have to take this medicine'. He's not worrying as much about the seizures, which is obviously a good thing.Our son is on Depakote at a very low dosage. We've seen no side effects of any kind with this medicine (we know this is not the same for everyone) but we attribute part of that to our effort with his neuro to go with the lowest dosage necessary to control his seizures. Socially, physically and academically -- there have been no changes in him once he began taking the medicine.In short, your specific situation will dictate what decision you make. My only advice is that you not only make your decision based on the physical symptoms you see displayed by your son but on the psychological impact the seizures may be having on him as well.
kodankk

My son is now 9 1/2 and has had these seizures for 2 years. I am worried that if I don't treat him he could get brain damage or die from one of these.  My son does not want to take the medicine.  He does not like blood test that are necessary.  Most of his seizures are for 30 seconds and only involve the face twitching.  Those 2 bad ones (july 02 and this past saturday) really scared me.  Up until saturday we were ok with the not medicating decison.

 

We are still gathering more information and I am trying along with my son to make the right decision.  Is there anyone out there whose child has had this and HAD outgrown it.  Please let me know>>

 

Thanks

Natalie

antcon
im not sure if anyone has replied to you and i realize this is 8 months or so since you posed your question, but I am living proof that you do grow out of BRE. I was doing research for the drug discovery company I work for about tegretol and ran into your blog. I began having my seizures at age 8 and took medication until i was 12 or 13, once i stopped the meds i had no issues and have had no issues since, im now 21. if you have any questions email me, decooper@ucsd.edu would be glad to help shed any light on the subject that i can. good luck
decooper
Natalie:I noticed that its been about a week since you posted your question -- and without a response. I am also curious to hear from others whose child has outgrown BRE but the more I thought about it, the more I deduced that you may not get the answer to your question here.This site is for those people who have epilepsy or for family members with a loved one that has epilepsy. My guess is that if someone is fortunate to no longer have epilepsy, it is very unlikely that they would be a continuing regular attendee of this forum.So, please don't interpret the apparent non-response you are getting as indicating that no one outgrows BRE -- the people that can answer your question are not likely on this site.--kodankk (Ron)
kodankk

Ron

Thanks for your response. You are probably right, I'm sure those people have moved on.   Lets just keep our fingers crossed that its true about BRE.

Natalie

antcon
You have to be careful, for when his body matures and goes into puberty, seizures can increase.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa
angel_lts
Hmmm, good point! I guess the fact that none of them are responding means they haven't come back! Not even one! Wow, perhaps that is a very good indication that they are all seizure free!~~skwest
skwest

My son was diagnosed when he was 8 ,   he had 1 seizure and never had another one for a year, until this past December  He is now 9,  He started having them weekly and then a few times a week always in the morning around 7:00  Brodies would leave the right side of his body paralyzed after wards , he also had the face twitching.   we medicated him when he had one during the day just standing in front of the fridge holding a carton of juice he was unresponsive until he dropped the juice , He told me the same thing happened in school...  His Drs. put him on Tegretol  100mgs am  and 100mgs pm....he has not had ANY SEIZURES SINCE,  He has started eating better and has even gotten up to 55lbs 

 

 

if you need anymore info please email me     gormley_sharon@yahoo.com

brodie...

sorry but this isnt my reply but its my name..

                     ide tell you a bit more about security issues but im outta here

                     GOOD RIDDENCE

brodie