Benign rolandic epilepsy
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Epilepsy Action is indebted to Dr Richard Appleton, a Consultant Paediatric Neurologist who specialises in children’s epilepsy, and to Dr Rachel Kneen, Consultant Paediatric Neurologist and Dr Stewart Macleod, Specialist Registrar in paediatric neurology, at Alder Hey at Alder Hey Children’s Hospital, Liverpool, who have kindly prepared the information on this page.
Benign rolandic epilepsy is an epilepsy syndrome. It is also known as benign rolandic epilepsy of childhood (BREC) or benign epilepsy with centro-temporal spikes (BECTS).
Benign rolandic epilepsy is called 'benign' because it has a good outcome - nearly all children with it will outgrow it during puberty.
'Rolandic' means the seizures begin in the part of the brain called the rolandic area. The seizures are classified as a partial seizure because only this one part of the brain is involved.
Benign rolandic epilepsy is one of the most common types of epilepsy in children. It affects almost one in five of all children who have epilepsy. It affects boys and girls equally. It usually starts between the ages of three and 10 years, and often stops around puberty (aged 14-18 years).
Children who have this type of epilepsy are usually well otherwise and do not have learning difficulties, although some may have specific difficulties with reading and language or with drawing and visuo-spatial skills.
Symptoms
Seizures often start as the child is waking up in the morning. There is a feeling of tingling (like pins and needles) on one side of the mouth involving the tongue, lips, gum and inner side of the cheek.
The seizure may also involve the throat which may cause speech to be unclear and therefore difficult to understand. The child may make strange throaty or gurgling noises and it is often this which alerts parents that something may be wrong. The child often knows what they want to say but cannot speak properly.
The seizure may also cause twitching movements (called clonic movements) or a stiffness (called a tonic movement) of one side of the face. These movements may then spread to the arm and/or the leg, usually on the same side as the movements in the face.
Occasionally, both sides of the body are affected. When this happens, the child loses consciousness, becomes stiff and has regular, jerking movements of the arms and legs. The child may also be incontinent. This is called a tonic-clonic seizure, which is a generalised seizure. After this seizure, the child will be sleepy and some children may sleep for a few hours.
Diagnosis
This will involve a full and accurate history of the seizure(s) and an EEG test (electroencephalogram), which records the electrical activity in the brain. In benign rolandic epilepsy, the EEG will pick up epileptic activity in the rolandic – also called the centro-temporal – area of the brain. However, sometimes the EEG may in fact be normal, but this does not mean that the child does not have this epilepsy syndrome.
Treatment
Treatment with anti-epileptic drugs is not always considered necessary, since it is known that the seizures will tend to disappear when the child gets to puberty. In addition, many children will only have one or two seizures and therefore will not need any treatment.
However, most parents and most doctors feel reassured by treatment. Either carbamazepine (Tegretol), lamotrigine (Lamictal) or sodium valproate (Epilim) are almost certain to be effective in controlling seizures.
The anti-epileptic drugs are taken every day, usually for two years.
Prognosis (outlook)
The fact that this type of epilepsy is called benign means that it has a very good outcome. Nearly all children with this type of epilepsy will outgrow the tendency to have seizures during puberty.
Children who have benign rolandic epilepsy do not usually have learning difficulties. Some may have some problems with reading and language, but most cope well with school work.
Support organisation
Contact a Family, 209-211 City Road, London, EC1V 1JN, telephone 0808 808 3555, http://www.cafamily.org.uk/
If you would like any more information about epilepsy, then please contact Epilepsy Action via the Email Helpline or, if you live in the UK, by phoning the Freephone Helpline on 0808 800 5050.
14 March 2007
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Comments
My Son had his first seizure in 2004, this was the scariest day of my life, standing by and watching helplessly as he shook uncontrollably
His first seizure was a grand-mal, this is the only one he ever had, all the other seizures were partial, however he was alert durng all seizures and could remember everything around him, he even got to the point where he would make signs with his hands for us to help him walk the seizure off, he fought very hard with each seizure and did eventually control them and bring himself out of them!
We were sent to the City to undertake some test, all test came back negative, the Drs could not find anything wrong with him, however Through our own observations we connected his seizures to lack of sleep and dehydration.
Eventually he was put on Tegretol during this time he had no seizures, he is now 15yrs old and has now been seizure free for 6yrs and off his meds for 4yrs.
He is a star footballer in the making there is no stopping him now, when i ask him about his seizures today he states firmly that his faith in God is what pulled him through!
My Son was diagnosed in Oct of 2009 with BRE. He has had 4 seizures since then although none as sever as the grand Mal he first had in Oct. According to his neurologist medication is not needed unless the seizures start to interfere with his day to day activities if he is having so many seizures he is sleepy and irritable the next day. An MRI was done but with his type of epilepsy it will almost always be normal and it was. The MRI does not show the evidence that any seizure has taken place. Because this type of epilepsy does not cause brain damage the MRI is strictly a precaution. ( I am an xray tech and had one of my best nuero radiologist look over his images) he agreed with the neurologist that this type of epilepsy is harmless.
now try telling that to a scared parent. Witnessing my son have these seizures is very frightening. I feel so helpless and always wonder if I am doing the right thing by choosing to not medicate. I have just read so many negative things about the side effects of the anti seizure meds. Now we do have on hand emergency drugs should his seizures ever last longer than 5 mins.
He does have alot of headaches, some mild balance issues, and does struggle in school with reading and language. With extra tutoring and a lot of patience he is at grade level now. Apparently some kids do experience learning difficulties with this type of epilepsy due to the area of the brain where the seizures occur.
hope my experience with this is helpful. Just find a good neurologist and trust your instincts..
Samantha, my 6 year old had been diagnosed with BRE on Christmas Eve of 09. They put him on dilantan and he developed a rash after 7 days, then they put him on keppra and he started having aggression problems in school and very emotional, breaking out crying for no reason. So, we made the decision to take him off meds and see what happens, well low and behold he just had his second seizure (which lasted and hour and a half) and he was hospitalized overnight and is now on topomax. We were assured that the aggression and anger would not be a side effect. Our child was never an aggressive child and just could not tolerate the problems at school since it was SO not like him. So, we will see how things go from here. Hope things are going well with you and your child.
Hi
We are in the same boat as two other recent posters - our 7 year old son had a 30 minute grand mal seizure in early April, and during the two days he spent in hospital he admitted he sometimes gets a twitching face. After what seemed like an eternity he had an EEG which confirmed BRE, so we too are reading everything on the subject. There is no intention to medicate as yet, though I suspect the view is to wait and see if there are any further seizures before taking that route.
After two months without anything further happening, on Saturday we witnessed one of these facial spasms which lasted for about a minute, so we are geared up to expect a more severe seizure in the near future. Does anyone know if there is a sort of build up to grand mal ?
The only thing I can think of which is relevant is that the previous major seizure came at the end of a holiday period where he had a few later than normal nights, with less sleep than normal. After the seizure we enforced a strict earlier bedtime routine and reduced his time on computers and TV, which seemed to work. This half term week he had a fem more late nights (he suffers in the heat and found it difficult to drop off) and this seemed to result in the spasm on Saturday. I know there is some suggested link between a lack of sleep and the onset of some seizures, but as we have such limited experience I wonder if anyone with a longer history has seen a similar pattern ?
My daughter is 8 and had her 1st Grand Mal seizure when she woke up the other day. Today we were just give a preliminary diagnosis of BRE. I am currently trying to wrap my head around this and process all of this. I don't know a lot about it, and without the MRI and EEG I am not certain that is what she has. But the Doctor is 90% certain. I am just angry right now because my child has epilepsy!! She may grow out of this, but when? Will it evolve into a different type off epilepsy when she is older?
hi- my daughter has BRE. She had one partial seizure at age 6 and then 2 grand mal seizures at age seven. She took tripeptal for six months(hated it!) and lamotrigine for about 18 months. She has not taken any meds for about 18months and hasn't had a seizure for almost three years. I would really love to know if it's over. Does any one know? Does she need to get to 15 or 16 to be sure? Are you ever sure? My fear is that it really hasn't started yet- that the seizures are going to come back. Can we be in for even more seizures?
My son is eight years old and very very normal.
Last saturday my wife woke up in horror because my son was making a gurgling sound, eyes fixated and extremities shaking. This happened for less than a minute. We rushed him to the hospital, he had a head ache, threw up and felt better. Doctors suggested we take ECG and EEG tests. First one was the ECG where there were no strange findings, everything normal. Next was EEG and met the doctor today to confirm brain wave movements in the locations of the brain confirming BRE.
Doctor told us no need for medication. She also told us to read up on BRE and told us to see her again after a month in the event something happens and we want to medicate.
Given the reading, I dont think medication is necessary. This will go away as he reaches puberty. Appreciate your thought and inputs here.
My son had his first seizure just before his 10th birthday. I was so scared I didnt know what was going on. I thank God that I got up earlier than normal that morning and went into his room to get his school uniform ready. I also thank God that my husband who has life saving skills didnt go for his swim that morning. My son was finding it difficult to breath and was unconcious. My husband had to give him mouth to mouth at one stage as his breathing completely stopped. I went to call the ambulance and all I could hear was my husband telling my son Luke to stay with us. When I went back to the bedroom I thought my son was dead, he was on his back and there was no sign of life. I will always remember how his short life with us flashed before my eyes. I began to shout NOOOO and started to press on his chest in an attempt to get him back. My husband said he was shallow breathing and just to wait until the ambulance arrived. When they did they just woke him up he was very confused. He didnt know where he was or who I was ( I thought he had brain damage from the lack of oxygen). However by the time we got to the hospital he was aware of his surroundings. We were told to go home and wait for it to happen again, I found that really hard to take. However, it didnt take long before his next seizure which happened just after he had fallen asleeep. He was under stress at school and I believe this is what caused the second seizure. He came around alot quicker and was immediately aware of his surroundings and thankfully who I was. He was brought to the hospital again and an EEG was arranged. He was diagnoised with epilepsy and put on medication (Lamictal) twice daily. Since then we believe he has only had one seizure ( at least that we are aware of), he woke up and found it difficult to speak and had a tingling in his mouth. I find it very interesting the comments I have read about the drooling and twitching in the sleep as he tends to do this all the time.
Yesterday he was finally diagnoised with BRE they have said he will be taken off his medication starting next May. I know it is a year away but I am already anxious, I dont want to revisit that place, the place that tells me my son will die in his sleep. He has the special pillow and an alarm system but it is only a token I get very little comfort from them. He is going away this summer to an all Irish school for three weeks, the doctors think it is a wonderful idea. However, even as I write this my heart is pounding at the thought of not being able to watch him 24/7. I want to keep him wrapped in cotton wool but he is 12 years old now and tells me he wants to do the things other boys do. I know he is right I cant hold him back for the rest of his life, I cant mother his forever.
I went through a really bad time at the beginning. It took a lot for me to accept that he had epilepsy and I was very angry at the world. Those feelings have gone but I really worry that they will return again its not a nice way to go through life.
I am so happy I found this site and reading all the comments has made me realise I am not alone. I wish you all the best in going forward.
hello my son is 9yrs old his first episode was when he was only 1. my son was born very premature at only 24wks weighing 1lb 9oz and 11in. he is my miracle baby but i must say when i first experience his bre it was very scarey. my son still takes trileptol and it 2x a day. he is also adhd so the dr. says. but i thank god my son does not have any learning disabilities and he's very advance in his class. my son still gets his episodes and the worst part of this he only gets them in his sleep. it is very hard for me to sleep at night. i am constantly waking up to check up on him. i read the stories these children go through and parents. i understand completely and i hope for all of us this will eventually stop.
Hello
My son is 2yrs old and has 9 fits since he was 13 months....this has been horrible the 1st one he was convulting, choking, foaming at the mouth, went blue and then loss conciousness this felt like forever..the rest havent been much better. However the doctors have been putting them down to febrile convulsions untill his last convultion on the10th march.
I have since seen a doctor who thinks he may have bre. I am now waiting for a appointment to have the EEG test done.
Me and my partner are struggling to except this as he is such a healthy and strong boy. It is both scary and comforting reading your stories but I have noticed my boy is alot younger than most of the children.
Im worried and feel pretty helpless to my son..just seen to be waiting for his next fit.
My son is 7 and started having seizures in November of 09. He was diagnosed with bre. We started him on dilantin and he took that for a little over a month and his body did not respond well and he ended up having a long seizure from the dilantin being toxic in his blood. We then put him on keppra which gave him awful side affects of aggression and anger. We are now weening him off the keppra while starting tegretol. Has anyone given their child this? And if so what are your thoughts on it. It scares me every time he starts a new medication because of what the dilantin did to him. Also there are times where he will drool throughout the day for several days and then he has a very small seizure after that. I would love to here some of y'alls testimony's :)
my son aged 11 was diagnosed with bre in march this year, he had his first seizure on new years morning, which to be honest scared the lives out of us. he then had 7 more smaller seizures, where his mouth, lips and tongue go numb and he drools a lot, they usually last for a couple of minutes and always happen in the morning as he wakens out of a sleep. he is now taking tegretol twice a day and so far so good, we have had no more. he still enjoys all his activities which is good, and lives a relatively normal life. it really helps to read comments from other people. all the best to everyone.
It has been a couple of months since I have written. My daughter who is 9 was diagnosed in August 09 with BRE. She was put on medication in Oct. 09 and was doing great. She has since had a couple of seizures in February the last 2 Fridays of the month. Then we were free and clear till last night. She has had a busier schedule the last 2 weeks her big chorus concert is approaching this week. The children had extra practices which in turn made her routine a little different. She was telling us the last week and a half that she felt she had begun to twitch a little during the day when at school. But never had a full seizure. When putting her to bed this week my husband and I noticed movements when she was sleeping. We were aware that if she was going to seize this would be the week. So last night after going to bed she had a small seizure didn't last long. She realizes when she wakes up that she had had one. This time she said she could not hear me talking to her, and she was glad her motor skills stayed in tact so she could talk to us after. Then shortly after she went back to sleep with us and woke up very bright and chipper this morning.
Ron,
My wife and I have an 8 year old confirmed with BRE in early December 2009. All seizure symptoms you mentioned are the same with the exception of the vision loss. We first noticed an episode while driving in the car with him asleep. When he awoke, he seemed lethargic and his speech was incoherent. He was drooling quite a lot as well. The episode lasted for around a minute. We called our doctor and were told to inform them if it happened again.
I wanted to respond to you for a couple of reasons. The first would be to mention a very bad episode I had to endure with my son one day home sick from school. This was a few months after our 1st call to the doctor. This was the first time I realized something was terribly wrong. I'm sure you can attest it's an incredibly frightening thing to witness. To make a fairly long story short, he was immediately taken to the emergency room as I feared he was having a stroke. Once at the ER, he seemed just plain worn out, and at this time he vomited on the floor in the waiting room. I can only guess that's a by-product of having a seizure with stronger symptoms. All his vitals were fine but the episode led to the 24 hour EEG and the "official" diagnosis. I can also add that while we've had a few seizures since then, none have been that serious and no other vomiting has occurred.
We did have one on Christmas morning which made for a not so happy holiday. After the latest on March 11th, I feared the frequency of the episodes was increasing. It was then that I came across your article here with regard to MSG levels in food. My wife and I both work, so being on the go, it seems we fell into the habit of feeding the kids maybe more frozen and fast foods than we should have been. We discussed a diet change with our son and are trying to eliminate such foods with high sodium content. He readily agreed to change the way he eats and we have all but eliminated frozen foods high in sodium like nuggets and french fries. Trips to MacDonald's are all but a thing of the past. The results so far have been great. No episodes to speak of in nearly a month. Anyway, thanks for sharing and best of luck to you in the future.
my 10 year old boy has benign rolandic epilepsy. it all started 3 months ago. we were told that the seizures would happen at night time while he was sleeping or when he is waking up. but in the last 3 months he has had approx 10 sleeping at night timeand 5 awakeing during the day. today he has started to take lamotrgine. im not happy about the side affects, but i do feel that he does need to go onto meds, so he can try to stop thinking about the next seizure.he is still playing rugby and swimming every week.
Yes. My son was just diagnosis at age 10 1/2. He may of had Benign Rolandic Epilepsy for years but since it only occurs in his sleep we never noticed it until he fell asleep in the middle of the day after little sleep the night the night before. When he was 6 and in first grade he was great in all subjects he just could not read. He had to repeat the 1st grade but is doing much better now. We havent started any medications yet but the doctor does reommend it and my 5 year old niece has it too and has been on the meds for 2 years and is doing fine.
It has been a little while since I have written but I wanted to let everyone know my daughter McKenna had 4 seizures during the week of Halloween 2009. After having this cluster she has been medicated with Trileptal 150 two times a day and will be seizure free 3 months on January 30, 2010. It is nice to finally relax and get some well deserved sleep. I always still worry that she will have one at night but she is in her bedroom safe and sound. I feel as long as she is well rested and continues to be on a schedule she does fine. Thanks for listening hope of the children and families are hanging in there. Happy New Year.
Hi David,
You can find information about safety alrams in our links sections at http://www.epilepsy.org.uk/links/alarms.html
Hope this helps
Andy
Epilepsy Action
Our 9yr old son has just been diagnosed with BRE after two seizures. As the occur at night or early morning is there an alarm you can get/recommend to get early warning of the seizure occuring?
Thanks
hello everyone, i found this article just today, i am from Philippines, and i had this disorder..my first seizure happened when i was 9 or 10, then again after a year. i only had 3 seizure ever and it all happened during my sleep. i dont even felt any of it, all i can remember is just waking up ing the hospital. i undergone phenytoin therapy for i think 3 years. i'm now 23 and very well. nice to hear everyone's stories.
It is very nice to hear from someone who actually had the disorder themselves! It is supposed to run in families, but neither one of us, or our siblings, or our cousins, ever had a seizure of any kind, not even a single febrile seizure. No idea why my daughter has it. Do you still have symptoms, are you still on medication, how long did the whole thing last for you? How many seizures did you have? I am glad to hear you did not feel that it affected you too badly. Thanks for the advice. I instinctively comfort my child if she has a seizure, I can see the fear in her eyes and it makes me so sad for her. The seizure in school must have been very hard for you though!
If anyone is worrying about their child or themselves, they shouldn't worry as much as I had this disorder. The main thing I can tell you is to comfort the one with the disorder. I had a seizure in school, went unconscious and hit my head off a table. All the symptoms here are very accurate, I knew when a seizure was coming, the tingling would start, then the numbness, then the drooling and loss of control with speech. If your child come up to you complaining of any of the symptoms comfort them, any take them away from any hazards (tables, sharp edges, etc). I eventually went on medication and never had a seizure again. I don't remember any side effects from the medication.
Nikki
I'm not sure that it gets any easier and if it does it hasn't for me either. Every night when we go to bed I lay awake and get scared if I hear a noise because I think its her coming down the stairs to tell me that he is doing it again. He is scared to and he will just appear on my bedroom floor in the middle of the night. I hope that it gets better for you
Hi my name is Myndi and my 10yr. old son Bryce just found out that he has BRE and this is scary and a relief at the same time. The first time he ever had a seizure we were driving down the street. It was July 5 2006 and his sister and I thought he was messing around. When I realized that he wasn't and got him out of the backseat of my car left my car at the light and ran to the nearest building which happened to be a liquor store. I put him on the counter and freaked out. I thought that my son was dying right in frount of my eyes. We went to the Dr. and never found out anything just thought that he had hit his head and forgot about it well never really forgot but put in the back of my mind until 6wks ago. He had another one upstairs in his bed and his sister came down crying telling that he was doing it again. My boyfriend who is an RN ran upstairs and I called 911 all they could say is mame you need to calm down and that is not what I wanted to hear and just seems like it took forever for the ambulance to get there. We went to the Dr. again and did another EEG and this time he said that it was abnormal and that was it. He had another seizure 1wk ago and this time I switched him Dr. because the last one didn't seem to give a darn. The new Dr. contacted me thtat next mourning and told me what it was and we got him on Trileptol and it seems to be going well so far. I hope that he does grow out of it. The bad thing is that his father and I neither one know our biological fathers and cannot find out much info about medical history. Thanks for having a place to be able to vent and with people who understand.
Hi Nikki,
You will never truly feel comfortable at night when you are sleeping not knowing if your daughter will have a seizure. My husband and I recently bought baby monitors for the house. The main monitor in my daughters room and two monitors that you can hear everything. We have one downstairs and one in my room. The Dr. at CHOP told me to get some sleep because I am sure like you, you watch your daughter until you feel she is sleeping comfortable. The Dr. reminded me that because my daughter has them also when she is sleeping that she is in her room and it is a safe place. As long as she is in her bed with nothing around the bed that could hurt her. Every night when I go to bed I check her room and make sure toys are not where she could hurt herself if she falls out of bed. I also shut her dresser drawers so there are no sharp edges. My daughter is 9 in Nov. and doesn't have any idea when it is going to happen. So I think for a 5 year it would be also difficult to know. Since my daughters 1st seizure in June I am still sitting by her room or next to her when she falls asleep. I haven't come up with any solution for me being paranoid about her having a seizure while I am asleep. All I know is if is night time and we are sleeping and I here a thump to go check on her and see if she has fallen out of bed. So far she has not. My daughter also gets up often in the middle of the night and comes in my bed. I don't know why she wakes up. If I am awake when it happens it is almost like she is sleepwalking other times she is so quiet I don't even know she is there till I am disturbed by her stealing my covers. It is a very hard thing to get used to and it does take time. I haven't reached that point yet. Hope this helps. Wishing you and your family good health.
Hello
My son Bryce who is 10 yrs of age just was diagonosed with BRE and it has been a relief because I could not find out what was wrong with him for a long time.I don't know how I am ever gonna get used to it because it is the scariest thing I have ever witnessed in my life. He started taking medication on Mon. and I hope that it is gonna help. The name of the mdication is Trileptol and is taking 2x a day. My one worry is is he gonna be able to live a normal life. He is very much into football and sports in general. Staying all night with friends and just being a normal boy.
Hi Everyone....I was wondering if your child who has BRE have difficulty reading? My son is very smart and great with math but has trouble reading. He has been diagnosed with BRE for 2 years....we have chosen not to medicate him because his seizures happen at night!
Hi! My 8 year old child had her first seizure last December, at age 7 and 9 months. It was a complex partial seizure involving a head injury as she slammed into a door on her way to our room. There was a grunting noise before and lots of saliva on the floor when we found her. She was unconcious and vomited three times after the seizure. She was hospitalised. The EEG showed frontal spikes. She had a sleep deprived EEG a month later, which also showed frontal spikes, and ditto another EEG this summer. The EEG is not typical of Rolandic epilepsy, but the symptoms are. She has since had seizures on three more occasions, much less severe than the first one. Almost exactly 100 days after the first seizure, in April, she suffered a classic Rolandic seizure with a gurgling noise, she came into our room with the left side of her face twitching, she retched and it was over within a minute. The next night, at exactly the same time, 3.50am, she had a similar, but even shorter seizure. Another 100 days later, in July, she came down 40 minutes after falling asleep, gurgling, with the left side of her face twitching, she vomited afterwards and the seizure also lasted less than a minute. The next night, at exactly the same time, 8.50 pm, the same thing happened, this one also less severe than the night before. Two nights ago, at the same time, more than 100 days after the July seizure, she had a rather severe seizure, with the same symptoms, terminating in vomiting too. Last night, no seizure! I am hoping it means the syndrome is approaching its end. It has gone from early morning attacks to falling asleep ones, the attacks stay the same, but become less severe, and the pattern of seizing two nights in a row has been broken. She is not medicated, She has had some mild difficulties in school, a bit hard to say if they come from the epilepsy, as she is schooled in a foreign language. I am so hopeful, I wish you all the best and t is good to know we are not alone! Good luck.
Hi, I am the mother of a 5 year old girl who was diagnosed with BRE last year after her 1st seizure. It had been 14 months when she suffered her 2nd seizure which occurred this past Sunday. Both seizures were tonic clonic and both occurred in the afternoon when she went down for a nap. They start off with her staring and being unable to talk clearly and making a loud snoring like noise. After about 2 minutes of that her body begins to convulse for about another 4-5 minutes. She also begins to drool. When the seizure is over, she has left sided weakness. This extends from her face all the way down to her feet. After a couple of hours of sleep, she begins to come around to being her normal 5 year old self. I have never witnessed her have a seizure at night and my question is how do you monitor your children when everyone is asleep at night. My husband and I were thinking of maybe getting her a bell to ring when she starts to feel different but I don't think she truly understands the onset of her seizures. Any suggestions are greatly appreciated. Thank You!
Wow, what a great informative site. I wish I would have had access to this site 9 years ago, my daughter started to have seizures, and was later diagnosed with BRE, her seizures progressively got worse over the next two years, it took us two years to find the right medication. It was such a reilef to see her stop seizing, but the medications really made comprehension almost impossible for her at school. She was on Topamax, & Depakote for the next 3 years these medications have hindered her learning capacity at such a huge growth period for her. She has now been seizure free for the last 6 years, and off of all meds for the last three years. She is doing wonderful and is almost 15, but is in a specialized private school to assist her in her areas of weakness/loss. Knowing what I know now, I dont think that I would have been so quick to medicate, but when you are watching your child deteriorate before your eyes, you will do anything to make them better. I would encourage all parents to find out what the potential side effects are to any all medications that your child may be on or you are considering taking- Topamax our miracle drug is often referred to as "Dopamax" or "Stupidmax". Thanks for putting together such a great website!
My son was diagnosed with Rolandic Epilepsy about a year ago. When he has a seizure, he has eyes wide open, unmoving, looking straight ahead. He remembers what happens but cannot see during it. His jaw twitch and his body is stiff. We are reluctant to give him medication. He has a series of seizures about 4 months ago. We noticed that we had been visiting Chinese restaurants during that period. We suspected MSG (monosodium glutimate). We stopped all restaurants with MSG and he didn't have a seizure for 4.5 months. Last weekend we went to a restaurant . He ordered fried fish and french fries and the waiter said did not have MSG. He ate about 6 french fries when the waiter can rushing out and he said he made a mistake. The fries did have MSG. The waiter made some without msg. We didn't think the small amount he ate mattered. That night he had a seizure. It is fairly conclusive to me. MSG never mattered to me before, but now it does. The internet says it is all over, especially in Kentucky fried chicken and in McDonald's fried chicken bits. It is also in Cheetos, his favorite snack. What worries me is that he had purple lips this last seizure. Has anyone else had that happen? Also he vomited once - another worrisome fact. Has anyone had that before.
Hi
my son is 7 yrs of age and had his first seizure in May while we were on holiday. We were travelling from our camp site to the beach. He had a very disturbed night sleep and had fallen asleep in the back of the car. The partial seizure included drooling ,speech cessation, face drop and twitching we thought he was having a stroke, it was the scariest moment of my life. He had an eeg with clearly showed rolandic spikes and we are waiting for an mri in Oct.
He had another seizure in Aug again asleep in the back of the car after visiting relatives 1.5 hours away. This time the seizure didn't stop and progressed to a grand mal by which time he was in an ambulance and they gave him drugs to stop it. Again we felt very traumatised although he takes it all in his stride. We have not witnessed any at night but that is not to say he doesn't get them. We are very strict with bed times now and he is not allowed to do sleep overs which he finds annoying!
My son has also struggled with his speech and the neurologist also diagnosed dyspraxia. Fortunately my son has a very strong confident personality so we are getting on with life in the hope he won't have many more and he will grow out of it in puberty.
This is the hardest thing we have ever faced but it does help hearing other families going through similar problems.
Hi,
I have been looking at the comments on this website since June 18th. I have an 8 year old daughter who had her first seizure on the 18th of June. She was not feeling well and had a bed case of the runs and came home from school and then continued to have the runs and vomitted once. I told her to lay down and rest. Then I was awoken b y her hitting my body. She was in a full seizure eyes rolled back, very rigid, catatonic state, there was no speech. Freaked me out I had never witness anyone having a seizure before. We had an EEG and MRI done. The EEG showed seizure activity MRI was normal. We went to CHOP in Philadelphia. Which they said that the seizure in June was a provoked seizure but could not really tell us if it would happen again. Then she had another seizure in August which CHOP said that the seizure she had mirrored her EEG which I guess was good because then they could say that she could have BRE. Which is only when sleeping. Still nerve racking but we can handle. Then on the 15th of Sept. she wet the bed out of nowhere and doesnt remember anything. So we went back to CHOP no new information was given because we will never know why that happened. Now for the past 2 nights 20 minutes after going to sleep she had a small seizure. Her Right eye was twitching crazily on both nights. She was awakened by the action of her eye and was very freaked out. She didn't know what was happening with her first two seizures only through what we had told the dr, with her listening. Now she keeps telling my husband and I that she doesn't need alot of sleep. My daughter is like the energizer bunny she is always moving when she finally closes her eyes it seems it begins. I just want to say thank you to all who have posted their comments it helped me in understanding what we are now going through. Thank you
Hi there - I have been immensely interested to read everyone's comments on these postings. For those of you with newly-diagnosed children I hope you can see that there are some successful people who have overcome what can seem like really big problems. It is very unpleasant to see your child holding their breath/twitching/dribbling and my daughter tells me she was totally aware of what was happening every time it happened and was mortified. Another thing my daughter suffered from was 'specific diminutive vision' which meant she would have periods where it looked as if she was looking into binoculars the wrong way and everything had 'gone small'. Our original GP told me that she was making it up and it was like an imaginary friend... but then we discovered through the neurologist that is is a not uncommon aspect of BRE. Nowadays she notices some minor things when she's really tired such as a twitching eye or a 'fizzy tongue and she is medicated with 1000 (gls? not sure) of Epilim daily (two large tablets). My daughter only ever discusses her epilepsy with someone if she thinks they need to know - for example her current long-term boyfriend or if she was to go swimming etc. Other than that she just gets on with living life to full and has done half marathons, been bugy jumping and just loves life.! She hasn't grown out of the BRE (she is 19) but just accepts it as part of who she is. Like other people, I am just incredily thankful that this is all she has to cope with. Good luck to you all.!! :)
My son is 12 years old and we have been told that he has Benign Rolandic Epilepsy. He had one seizure 1 year ago May 2008 and this May 2009 he has another seizure exactly 1 year later in the same Hotel room. I was thinking maybe something in the Hotel room triggered it? He is on medications but it interfers with school work. What is the best medications with few side effects? can anyone help? thanks
On July 24, 2009 @ 10:35 pm Brianna had her 2nd seizure. It has been 3 months. Now she will be started on Lamitical bid, with a EEG scheduled for next week.
My son was a premature birth at 25 weeks. He was in the hospital for the first 6 months, and had meningitis as a newborn. He had his first Grand Mal 3 years ago, and since he had it in his sleep, we dont know how long he was in seizure. He had no further occurrence, and was untreated until about 3 months ago, when he had another seizure, also in his sleep. This time it was discovered early, and he was brought out with medication at the ER. He was then placed on Trileptal, and should have very well been at blood level . Last night he had another seizure, also in his sleep.
I read that Benign Rolandic is a short temporary seizure, but it occurs only while they are asleep. , which is why I am here. The doctors and neurologists, can offer us no explanation. Does anyone have any possible insight, or ideas on what I can do to get this under control? My son is seven years old now.
Hi,my daughter was diagonised with BRE roughly 3yrs ago,althought our doctor at the time thinks she has had them longer as she has always been a restless sleeper,she is now 8yrs,it was scary at first,been my daughter copes with it really well,probably better than us,It was a while though that before doctors would recongise that there was a problem,she has been on carbmaizpine since being diagonised,she has been 10 months fit free,My daughter never had any pattern to the seizures,my only problem is she won't sleep out as she fears that she is going to fit.
Thank you for your words of encouragement ! It's what we all need .
This sounds alot like my symptoms though my neurologists just calls it nocturnal epilepsy. My seizures started when I was 15, only ever when I was sleeping....within the first 30 minutes of sleep, at first it was put down to exam stress, and I was questioned as to whether I was drinking and doing drugs. Eventually I had all the tests and they discovered that it was the left side of my brain that was causing the seizures. I generally know when i have had one because i bite my tongue and lip, wake up aching like i have run a marathon, ocasionally i wee but only usually if i am ill with something else and i have bruises I have tried lots of medications and none of them have totally stopped the seizures. I am currently taking keppra and that has reduced the severity of the seizures.
I find I get seizures when I get my period, when I am stressed, poorly or if my sleep pattern has been disturbed through going out late etc. I have injections to stop my periods and try to be sensible with my sleep patterns. Im 28 now and glad to say it hasnt held me back in achieving what I want in life- I am a qualified nurse and am learning to drive- I was a bit peeved that they wouldnt consider me for the army.
It is reassuring to hear from parents who are going through what we are with our 11-year-old son. I am also happy to read a couple of entries from adults who have outgrown BRE.
We always wondered why our son had so many bad dreams relative to our other children. We would put him back to bed and think, "wow, he really drools a lot in his sleep."
During the past 10 months he has had two grand-mal seizures. The first was on a vacation trip in the middle of nowhere. The second was a couple of nights ago. The first one really frightened us. We ended up in an ER at some regional hospital on the phone with our pediatrician and a brother-in-law and his fellow physicians at a children's hospital half way across the country trying to figure out what was going on. He had no recollection of the seizure, which happened while he was napping in the car and wondered for the rest of the week why his older sisters were being so nice to him.
What followed were several visits with specialists to rule out other, more serious, maladies. We were actually grateful for the BRE diagnosis. We opted against medication and chose to keep him on a fairly tight schedule.
The second episode occurred a couple of weeks ago in front of one of his sisters. He had awoken from a brief sleep and made it to the rec room before collapsing. We did a little better this time--made sure he could not hurt himself during the seizure, rolled him to his left side during the clonic portion, and kept a stop watch on the episode (mainly to occupy our daughter). We had let his schedule lapse and paid the price.
We are back on a regimen--still no meds. I sometimes sit in his room after he falls asleep and can see his leg twitching. I agree with prior postings that a/c and a calm-down period contribute to a better outcome for him--and for us. He is a straight-A student and an avid reader. He plays sports. He has a wonderful personality. Every night there is a one-hour time period when he is afraid of having a seizure, the girls are afraid of his having a seizure, and the tough dad (me) has to pretend that everything is cool.
His condition has affected what we do as a family. A couple of weeks ago his class had an all-day field trip (6:00AM to 8:30PM). The weather was in the 90's and the drive back from the last event was a 2.5-hour bus ride. We informed his teacher he would not be going--just a gut feel that this would not work for him. I took the afternoon off and we did our own field trip.
We are also foregoing the second game of a night-time double header. We will watch the first game and head home around 8:45PM. "Late nights" now end at 9:00PM and no sleepovers. Wondering if any of you have moved to revised schedules. We attend matinees at the theater. Maybe we are over reacting, but we want to put him in a position to avoid additional episodes.
It would be interesting to follow these groups of children on this board over the next few years and see how they progress.
My son developed epilepsy at 7. It started out of the blue, he was in bed with me and I was woken around 5am to kicking, put the light on and he was fitting, his left side completely jerking, he was awake but only able to speak just before the jerking stopped. He was left paralysed for about one minute after on that side. We ended up in hospital where the initial diagnosis was a night terror or psuedo siezure which we knew to be absolute rubbish. We were referred to a neurologist. The neurologist was fantastic, from my description of what happened he ititially said BRE but sent my son for a EEG. The EEG came back and we were told that it had a certain pattern on it which looked like BRE but for it to be confirmed he sent my son for an MRI. Of course as soon as I heard MRI my initial reaction was are they looking for something serious as most websites tell you that an MRI is not necessary for BRE. The neurologist told me that it was the quickest and easiest way to diagnose these days and that the MRI had to be normal to be BRE and it was to rule out any brain birth mark or damage that may otherwise have been causing the fit as MRI's are so detailed to pick up the smallest thing. Anyway on a positive note, the MRI was normal and my son up to date has only ever had 3 fits all happening just after waking, he's now nearly 11. We decided on the advice of the neurologist not to medicate although we were originally prescribed epilim syrup which remains unopened. So don't worry about an MRI, it is normal to have it done for BRE. Hope this helps to reassure you, I know exactly how you feel, its still recent for you and you are probaly still shocked at whats happened but it does get easier and I'm sure everything will turn out okay.
Hi everyone,
I am a 35 year old female now who used to have BRE as a child. It started when I was about 8 or so and the doctors said it would go away by the time I hit puberty. I was put on Tegretol for about 2 years. I would rarely get seizures, they didn't really have much of an impact on my life, though I remember being very diligent with taking my medicine on time since I'd be deep down scared of having a seizure. I went through a completely normal childhood with it, and the seizures completely stopped as soon as I hit puberty (around age 11). My main symptoms were twitching and uncontrollable jerking of the tongue. A few times I did collapse, too. I do have low blood sugar and exhaustion and heat, in hindsight, seem to have been aggravating factors. My seizures would come on if I was very scared (like listening to a horror story, etc... on the radio back then). Also, they were mostly as I was waking up in the morning though they did happen while awake during daytime or in the middle of the night too, plus everyone is different.
The reason I write is to hearten the parents out there that are really worried. BRE is really benign for most children so do not think the worst. It seems to have had no hindrances for learning, schoolwork, etc... for me either, so do not worry yourselves about that please. Just try to relax and do not ponder on the worst. I am a mother now, so I know how worried we get, but take this note as words of encouragement, that God willing, your child will just be fine and this'll pass...
Peace and love to all.
has any one had their child turn blue, stop breathing during a seizure? my grandson 3 has dx bre & last 2 episodes he has done this. it is so scary.
My son was just diognosed with having bre of benign focal epilepsy, the dr. started him keppra, my son has learning disabilities and speech impairment, I was wondering if that was as commen as I heard it was?
I have read a lot of scary posts here about BRE and would like to offer some solace to parents. This diagnosis did not exist in the early 1960's when I suffered from several seizures at age 10. The seizures ALL occurred upon waking or falling asleep. Back then it was just called childhood epilepsy and my neurologist reassured me that I would most likely grow out of it. He did put me on a regimen of Dilantin and Phenobarbital. I still had several more seizures but frequency and duration were greatly reduced. (As another post noted, the seizures usually happened in warmer weather.) The seizures DID completely disappear when I reached puberty and I have lived a totally normal life since. I am now 58.
I would offer, if I may, a little advice to parents. This is a very scary thing for a child and potentially life changing. I was lucky to have very supportive parents and ultimately, a kind reassuring neurologist. (This is not a profession known for warm fuzzy humanitarians by the way.) My first neurologist was a creep and my mother did not like him. I'm so glad she was not intimidated into sticking with him! The second Doctor was a prince!
On the other hand, it is also of utmost importance to continue a normal life and NOT to identify your child as epileptic. It will follow them around all their life, unnecessarily. My parents always stayed cool and saw that I got right back to my routine life and continued to treat me as the normal capable child that I was. Good luck to you all.
I just left a comment about my 4 year old daughter having three of these episodes. and one thing i didn't mention is i can't figure out how she is getting them. There was no problems at birth or during my pregnancy. we were both very healthy. There is no one in the family that has had seizures, and she has never had any head injuries at all! so i'm trying to figure out how they got passed onto her. I am trying to figure all of this out and deal with her at the same time, so if anyone has any advice please send it my way. thanks alot susan
My 4 year old daughter just started having these attacks this week. She had one on monday, friday and then again saturday morning. i have an appointment set up for an EEG this next week and hope to find out more about what's going on with her. All three of these have been about 30 sec long, and it's twitching of her right side of her face and lots of drooling. I am really scared about this and hope they will eventually go away. My only concern is will they go into grand mal seizures? please email me at easton.susan@yahoo.com with any help of what to look forward to with this. i would really appreciate it..... thanks susan.
I have BRE and something wierd happened last night. I had two seizures in a row!
Dear Karl,
I would suggest you go back to your GP and ask for a referral to a consultant in childhood medicine - there will be an epilepsy consultant in your area. They will arrange for an EEG which will probably confirm whether or not your child has BRE. My daughter was 10 when she had her first fit when we were abroad on holiday and when I saw our GP he also wasnt sure and said for us to go back if she had another one. When she had another one (about a year later and it was a very big one) we called an ambulance and this is what got us referred to the hospital consultant. As far as I understand if it is BRE they outgrow it by the end of puberty and my consultant has suggested that during puberty because of the changes going on that there will be a peak of fits and then a falling off. You need to watch you son to try to work out any triggers - for my daughter it is extreme tiredness and things that put the body under stress - like low blood sugar. She is also a very anxious child and this contributes to her fits. My niece has had this and she had outgrown it by the age of 18. Because your son may be a late diagnosis, if he has it that is, they may suggest an MRI (which they did for my daughter) but a diagnosis can be obtained from the EEG. I don't know if this helps, but my daughter has her fits when she is dropping off to sleep (although they can be months apart) and what we did is use a baby listener so that we can be aware if anything happens straight away without continually running up and down the stairs! this had to be sold to her but she understood that it was for her benefit and I was tuned into the particular noise that she makes when she has a fit.
Best of luck and dont be afraid of asking for a referral.