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.
Because this page is written by an epilepsy healthcare professional and not by Epilepsy Action, it falls outside the requirements of the Information Standard.
Our thanks
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.
This information is exempt under the terms of The Information Standard.
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Updated March 2007To be reviewed December 2013
Comments: read the 17 comments or add yours
Comments
Hi my 8 year old daughter has been diagnosed with B,R,E she had her fits at night while always asleep. On her first fit we was getting ready to go to bed ourselves and we heard her bed squeeking (like she was jumping on it) i said to my husband that she is jumping on her bed she will wake the baby go tell her to get to sleep it was the worst night of our lives she was asleep but eyes were open but they were rolled up into the back of her head and she was shaking her whole body and grunting and foaming at the mouth she was unresponsive to me and when she finally stopped shaking she was drooling i have been around people who have had fits so i knew to call ambulance and get her to hospital she was kept in that night for obs and let home next morning with nothing then exactly 2 weeks later same thing happened again got her to hospital and she was sent home with an appointment for an EEG which showed up some changes then a week and a half later after her 2nd fit she had her 3rd one which was a little worse she didnt come around as quick and the paramedics had to call through to the hospital for a dr to see her as soon as she arrived at the hospital and ambulance had to have blues and twos on she had another fit in the ambulance this time she had been given cabamazapine which has settled the fits at the moment (touch wood) she was also sent for an MRI scan which was all normal thank god and she not had another one yet but we are always careful that it could happen again at any point i find it hard to sleep now just incase she has another one while i am asleep and i dont hear her i am scared to sleep so i only get a couple of hours of sleep a week. Her teacher has told us she is struggling at school with her work writing is a real problem for her she is also a loner at school not talking to anyone on playground even in class she used to be so out going and bubbly but now since the fits has started she has become withdrawn into herself quiet and just not herself. we hope she grows out of it. We have been really lucky with the school her teacher has been so caring and really helpful with her as too has the whole school they know if she is a but funny its not her just being lazy and they give her that little extra time in her work and she wont do alot but what she gets done is all she could manage things have now been put into place to help her like homework club where she can spend time doing some homework or catch up on work she has missed out on.
The way you have explained your my son has done exactly the same he had one in the morning then went to hosp csme home and had another, exactly twocweeks later another one. Hes just been diagnosed. Im like you, to scared to sleep I have no ides how to cope with this. Do the chdren just get on with it? Do they cope ok? Do they knownits happening to them?
My daughter was diagnosed with BRE may 2010 1 month before her 5th birthday, she had her first seizure at 6 months old but they just put it down to a febrile convulsion , she had 9 seizures in total before her diagnosis and even though each time I told them she had not been unwell or had a fever before the fever came after, she had an EEG at 2 1/2 which was normal they only gave her another EEG after she had a seizure lasting an hour in feb 2010 and that came back borderline she had another seizure lasting 45 minutes a few days after so was given another EEG which showed abnormalities, her seizures are mainly during the day and her shortest has been 4 minutes (not including focal/absence) she's had about 30 tonic clonic plus 50+ focal/absence seizures, I'm still not 100% convinced she has BRE but the Dr's don't phone back and the epilepsy nurse talks to me like I'm a child
My daughter was diagnosed with BRE 3 years ago when she was 4. Because of the length of the first seizure and her abnormal EEG we decided to medicate with the guidance of her consultant. We had a terrible time with her on Epilim with behaviour and weight gain and still abnormal EEG so we changed to Lamicatal or lamotrogine. This drug has worked really well for my daughter and the seizures are under control. I was wondering if anyone thought their child had or had been diagnosed with Aspergers syndrome. It has been suggested that might daughter might have high functioning autism or Aspergers and we are waiting for a formal diagnosis I was wondering if anyone had the same experience. It seems my daughter being nearly 8 is very young to have this diagnosed and also unusual for a girl. In all of this we have had amazing care from the NHS in the first case with the diagnosis and great on going care with her consultant. I still don't sleep very well at night and worry constantly but it is of some comfort that other parents are going through the same experiences and although I hate having to medicate my daughter it seems to stop her partial seizures developing into anything major.
Hi
Our daughter is also 8 and was diagnosed with BRE and high functioning autism. Your daughter is not too young to have this diagnosis; we had concerns from age 3 and many girls do now get diagnosed even younger. girls present differently to boys and are therefor often diagnosed later or missed.
Hi, My 7yr old son has just been diagnosed with BRE. He struggles with reading and writing and I were wondering if medicating him would help his learning?
My son Charles turned 9 on Jan 10, 2012 and had his first seizure Jan 24, 2012. It was a grand Mal that lasted about 5 minutes. We called 911 and an ambulance took us to the hospital where he finally 'came to', I was absolutley terrified! He did not have a seizure the next day, but did have short and less severe on days 3, 4 and 5. The 4th one was only facial movement with a little bit of gurgling and he never even woke up.
We found a neurologist who scheduled an EEG before we even brought Charlie to see him. They found BRE right away. He has the spike activity even when he is awake but it is much stronger when he is sleeping.
After that last seizure we went over 4 months with nothing. It was wonderful! Well May 31 at about 9 pm Charlie had another one. He was awake, but tired and it lasted about 30 seconds. It was the left side of his face, his neck and his left arm. He was alert and was actually moving his right arm to get his brothers attention. He was trying to talk and move as soon as it was over. His muscles were still too tight, so we were unable to understand him for about a minute. He went to bed and woke up feeling great and went to school Fri morning.
Friday night my kids camped out on the living room floor watching a movie. Charlie fell asleep at about 10:30. At 11 he had another grand mal. It lasted almost 5 minutes and I ended up calling 911. It's the gasping for breath that scares me so bad! I can deal with the shaking and even the rolling back of the eyes (though that is so awful), but the short gurgling breaths is the worst! Is this 'normal' for the breathing to be so shallow?!
Charlie is a very normal kid. He is getting straight A's, loves to read, plays baseball, football and is even in a gym class and can now do back flips! He is very strong, has many friends and his teachers love him. He seems to accept the seizures, but is clearly very upset right after one happens.
Charlie has now informed us that he thinks he had some facial tingling about 2 years ago. He had no more than 10 and it was while he was awake, but not in school. He thinks it was when he was out playing, but can't really remember. He said he thought it was normal and because it was so minor he did not tell us. He now thinks they were seizures.
He is not on any medications and I do not think we'll put him on any... I'm hoping things lighten up, so we do not have to make that decision!
My son Harry had his first fit on 16/12/11 I woke to him making a clicking sound and found him rigid yet convulsing, eyes wide and glazed and foaming at the mouth. I'd never seen anything like this and honestly though he was dying. Called an ambulance and after a good sleep in A&E we were sent home and just advised to go back if further problems. Exactly 2 weeks later he had another, this time milder. The left side of his face contorted, dribbling and making the noise. He did come round a lot quicker and seemed fine after, this led to the hospital doing an MRI which was fine, an EEG and even a night EEG all of which showed no abnormal activity. I was stumped. Too terrified to let him sleep anywhere but beside me and had no answer to what has happened. Now 8 days ago 1/9/12 after 8 months again just has he is going to sleep ( both others were, even the 4am he'd not long been woken by the dog) his brother is screaming blue murder Harry is having a fit. this one was just like the second, soon passed and all was well. We had an app with his consultant on 6/9/12 who throughout has been very reluctant to look into his problems, I explained what happened on the Saturday and this time she agrees to talk with her colleague who is an expert in this area. Also every doctor had made the point of filming it, You must try and get it on film they say.. Well Friday, just dozing off and he starts. I make sure he is safe and I pick up my phone and film it all & armed with this I head straight to A&E. After hours we see a doc who looks at my clip and he is immediately admitted. During the early hours when were finally given a bed 2 other doctors come to see this video, 1 being the doctor who saw Harry in A&E last December saying he recognised the name and heard I'd recorded it. They take me aside and mention these BR seizures so I have been researching like crazy ever since. We are home now and the team will be calling either tomorrow or Tuesday to let me know where we go with this. I have fought my sons corner from the moment his started and sadly felt fobbed off all the way until i produce a video..We share a bed, I come up and stay up at his bedtime and if I'm honest we are all struggling to cope. If anyone could point me in the direction of some good informative pages to look at I'd be most grateful. Just reading your comments has made me see we are not totally alone with it. Thank you.
Hi Victoria
I’m sorry to hear that you’ve had a bad experience trying to get a diagnosis for Harry. There are a number of medical conditions that can cause symptoms similar to epilepsy. This can make epilepsy difficult to diagnose. What can add to this difficulty is, when the tests given for epilepsy are normal. So, some doctors do ask for a video for further evidence to try and give a correct diagnosis.
The information you’ve seen on this webpage is the information we have on benign rolandic epilepsy. However, you could try doing a search on one of the search engines, such as, Google. If you're in the UK, you would also be very welcome to talk to one of us on the Epilepsy Helpline. It's a freephone number: 0808 800 5050.
It can be a worry when your child is having seizures during their sleep. Parents can miss out on the quality of sleep that they need to cope with everyday things. So, you might want to consider getting a bed alarm for Harry. This way you will be able to sleep more peacefully, when your son isn’t having seizures. I should point out that they can, however, be costly. There is an organisation called Disabled Living Foundation who have details of manufacturers of bed alarms. You could then make some enquiries.
Have you considered joining our forum4e? This is where people with epilepsy, and their carers, can post things for people to comment on. There is also a chat room available, generally at a certain time in the evenings, to speak to each other online. You’d need to be a member to do this, but membership is free. This is a good source of support.
Rosanna
Advice and Information Team
My son Carlos is 9 years old.. Back in May 2012 he had his first seizure. It was obviously the worse thing in the world for a parent to see. My husband and I were getting ready for bed and Carlos had just fallen asleep.. not 5 minutes into his slumber we heard loud kicking noise from his room. He was in a grand mal seizure. We were frantic.. My husband carried his stiff shaking body to our bed while I called 911. His face was blue and we were in complete shock!!! The seizure lasted a good 5 minutes.. after 20 mins or so he finally came to and was crying uncontrolably.. by then we were at the hospital and blood work and Cat Scan was performed.. all looked normal and the next day I called a Neurologist.. after his EEG he was diagnosed with BRE... as a parent we do all we can to keep our kids safe and bam out of the blue we can not control his safety... needless to say he slept in our bed for 3 months after that.. all looked good for awhile and then when Hurricane Sandy hit my son had 2 more seizures in the same night.. it was awful.. no lights, no heat and our son was having a seizure in our bed... although we have gone back to the Neurologist, we have decided not to medicate him... (he had a bad reaction to meds after his first seizure).. its been a little over a month and he is still in our bed.. I wake up every 10 mins because he shakes every so often.. (like we all do from time to time)... I just dont want to hear his gurgling noise that seems to happen in the beginning of his seizures... so basically I am writing this to let every parent of a BRE child know that we are not alone.. We all lose sleep everynight worrying about what if... hopefully when our kids are in their teens they will out grow this.. as long as we remember to lay them on their sides and keep them safe during their seizures... I also like to talk to him just in case he can hear me... I hope this helps someone and comforts them when they are worried... I know reading all the other comments has sure comforted me...
Tanya
Hi, just wanted some advice...my son has had issues for a while then the fianlly said he could have BRE. i have noticed more recently that he is waking alot at night. no reason for it. is this part of it. could a seizure wake him up? when he had the eeg done it was noted that the seizures were at night. Your help would be much appreciated.
Thanks
kirsty
Hi Kirsty
Thank you for your comment.
Sleep seizures can happen when a child has BRE. In fact, sleep seizures are well recognised with BRE.
Some children may be woken by their seizures. Sometimes there can be signs of sleep seizures such as, the child being more tired than usual in the morning, aching limbs, headaches, a messier bed than usual and waking during the night.
It would be advisable to discuss this with your son’s doctor who will look into treatment options for your son.
Regards
Diane
Advice and Information Team
Thanks Diane, Ive only just seen your comment. i have an appointment with his consultant in february so i will mention this as he is still waking a couple of times a week. We have also noticed and the school have informed us that he is struggling with reading.....This seems to be a major issue at home and he breaks his heart saying he cant do it. School have said he just doesnt concentrate and "wonders" quite often, which i think is a seizure, but as they dont really know much about it they dont know what there looking for. This can be quite frustration becuase half the time he forgets what your actually talking about! Thanks again for the advice
Kirsty
Hi,
Our five year old son had his first seizure when he was two and a half. It was when he was asleep in his car seat, his left arm was twitching and he was excessively drooling. He was admitted to hospital with various tests done and they came to the conclusion after his eeg that it was probably bre. We decided not to medicate after just one episode but a few weeks later he had some atonic seizures so they decided to do another eeg which they said was very "messy". They wanted to medicate him straight away so has been on eplim ever since. We are lucky that his seizures seem to be very infrequent but in his sleep so very difficult to know when they happen sometimes due to the fact that they can be very subtle. We also think he's had some absences.
Anyway my main reason for writing is that yesterday at school they said he seemed to be quite uncoordinated and a generally quite spaced out and just not himself. I was wondering if anyone has any experience of this and can provide any info? His meds haven't been adjusted since April last year so wondering if they need tweaking.
Many thanks in advance.
Hi,my son was diagnosed with epilepsy in sept 2012,he's had upto 25 seizures since then with the average one lasting at least ten minutes were we have to use his recovery meds(buccal midazolam)he was put on phenytoin and epilim as soon as he was diagnosed which seemed to control the seizures,however phenytoin is not advised as a long term med so he has been weened of it and his epilim dose is at the maximum allowed for his age(5) and weight,we have decided that epilim is not for him as he has turned from a quiet,reserved little boy into a hyperactive,zero concentration span,troubled boy which is heartbreaking to see,obviously the side effects of epilim,our specialist has advised to reduce the epilim and start on tropirimate,fingers crossed this will be better for him,it's all trial and error but we have become so paranoid at night that we have set up a camera in his room with moniter in our room,most of his seizures are at night just as he's dropping off to sleep,they are mainly complex partial and tonic clonic,recently he's had seizures were he's been fully aware but complains of his hearing going for a few minutes,we test him to see if he can here but he can't,the hearing always returns after a few minutes,he also has the occasional absence for a few seconds,the teachers said he had one at school last week,they have been brilliant and although he hasn't had a seizure at school appear fully prepared!
My 7 year old daughter started to have seizures in feb 2013..for no reason.all the symptoms,convulsions,foaming,gritted teeth,eyes rolling and stiff limbs..we called for ambulance which arrived..went straight up to a+e.the team there were helpful however there wasn't any support or help for us..nothing.we even had to follow up for our own eeg appointment.she was sent home without any medication at all.even though she had 3 in one night.really a terrifying experiance for us and her.she had another one 1/6/13 and fianlly they gave her SOME help with meds. We have her sleep in with us all the time for her /our peace of mind.the after care was / is rubbish...no help at all..after 7 weeks they finally sorted out an eeg appoint+a seziure nurse to vist us.we even tried restricting tv ,dvds etc..which we found out though our own,wasn't the case..found this site and is a great help to us.
I am a woman of 44 years with a daughter who's 8 who's best friend has just been diagnosed with suspected BRE following her mother observing a fit 2 nights ago.
My friends daughters diagnosis lead me to this page and whilst reading this thread I wanted to share with you my personal memory of my own BRE experiences as a child from a very early age until my last fit at about 10 or 11 as I now appreciate how scary this must have been for my parents, especially as I now have a child of my own.
As a child, I took Epilim for a number of years which helped to control my fits which mostly happened during the night. I remember having to be careful about what activities i was allowed to join in and being careful about strobe lightimg etc. Personally I don't remember the fits. I remember the early warning signs but mostly I remember the constant consulting visits to the hospital and all of the associated tests that followed. My parents always explained what was happening which was good and why we were there but mostly made these visits into a treat (by following each one with lunch and an icecream) which is now my main recollection, apart form the EEG's. I have a vague recollection of the fits but grew out of them and lead a 'normal' adult life with a sucessful career.
I hope that your children have a similar experience and 'grow out' of the fits also. My consultant did call me back for a talk when I was 16 and talked to me about how to deal with what to tell people about my condition as I got older and advised on a list of things to be cautious of in adult life which was really helpful and I must admit I have stuck to his list of do's and dont's. It really helped me to know what to say and to whom as I went to college, started work and if anyone asks medical history etc.
I now think that it must have been hell for my parents and maybe I was lucky but this was not nearly as scary for me.
I hope all of your children follow a similar path as they grow older and I hope it helps to hear from an adult who went through what your children are going through and came out the other side.