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Benign rolandic epilepsy

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an electroencephalogram (EEG) are also used to help identify epilepsy syndromes.

Epilepsy Action has more information about seizure types, learning disabilities, and the EEG.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact Epilepsy Action.

Other names for benign rolandic epilepsy

• benign rolandic epilepsy of childhood (BREC)
• benign epilepsy with centro-temporal spikes (BECTS)

Benign rolandic epilepsy

Benign rolandic epilepsy is called 'benign' because it has a good outcome. Nearly all children with it will outgrow it during puberty. It is called ‘rolandic' because the seizures begin in the part of the brain called the rolandic area. Mostly, the seizures are focal (partial), because only this part of the brain is involved.

Benign rolandic epilepsy is one of the most common types of epilepsy in children. It affects boys and girls equally, and almost one in five of all children who have epilepsy. 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. Some children, however, have specific difficulties with reading and language, or with drawing and visuo-spatial skills.

Symptoms

Seizures often start as the child is asleep or waking up in the morning. They have a feeling of tingling (like pins and needles) on one side of their mouth, involving the tongue, lips, gum and inner side of their cheek. The seizure may also involve the throat, which may cause the child’s 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 their arms and legs. This is called a tonic-clonic seizure. A tonic-clonic seizure is a generalised seizure (affecting both sides of the brain). The child may also be incontinent. After this seizure, the child will be sleepy and some children may sleep for a few hours.

Diagnosis

Diagnosis involves a full and accurate history of the seizure(s) and an EEG test. The EEG 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. Sometimes the EEG may be normal. This doesn’t mean that the child doesn’t have this epilepsy syndrome. Occasionally a sleep-deprived EEG recording may help with the diagnosis.

Epilepsy Action has more information about diagnosing epilepsy.

Treatment

Treatment with epilepsy medicines is not always considered necessary, since seizures tend to disappear when the child gets to puberty. Also, many children will only have one or two seizures and therefore will not need any treatment.  However, many parents, and most doctors, feel reassured by treatment. The epilepsy medicines carbamazepine (Tegretol), lamotrigine (Lamictal) or sodium valproate (Epilim) are almost certain to be effective in controlling seizures.

Epilepsy Action has more information about epilepsy medicines.

Outlook

The fact that this type of epilepsy is called benign means that it has a very good outcome. Nearly all children with benign rolandic epilepsy will outgrow the tendency to have seizures when they reach 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 

Contact a Family
Freephone helpline (UK only): 0808 808 3555
Website: cafamily.org.uk
Email: info@cafamily.org.uk

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Code: 
S003.02

Epilepsy Action would like to thank

  • Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital, Liverpool, UK and
  •  Dr Stewart Macleod, consultant paediatric neurologist at Royal Hospital for Sick Children, Glasgow, UK.
    They have kindly prepared the information on this page. It is based on their own research, experience and expertise.

This information is exempt under the terms of The Information Standard.

  • Updated August 2013
    To be reviewed August 2016

Comments: read the 18 comments or add yours

Comments

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

Submitted by Tanya Valencia on

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

Submitted by kirsty on

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

Submitted by Diane@Epilepsy ... on

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

Submitted by kirsty on

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.

Submitted by Karina on

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!

Submitted by Richard on

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.

Submitted by dan hare on

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.

Submitted by Nicola on

Hello.

My 9yr old son has had 4 partial seizures and 2 Tonic Clonic seizures in the past three months. I rang the help line (we're in Australia) after his 2nd partial seizure and they advised me to take him to the Emergency Dept where he was checked thoroughly by a paediatrician and we were told that he probably has Panayiotopoulos Syndrome (Benign Partial Epilepsy).

We were told to make an appointment with a senior Paediatrician and also for an EEG. The Paediatrician went on holidays so we will be meeting him next week for the first time.

However, my son has since had more seizures as I said above and yesterday he had his second Tonic Clonic seizure. They always occur just as he's falling asleep or in the early hours of the morning.

They always occur for between 3-5 mins. The partial seizures manifest as described above (one side of face/body, severe twitching jerking of head and arm, saliva, rapid blinking, making funny sounds etc). He always remembers them.

After the second one, we moved him off his bunk bed and we have since installed a doorbell in his room (which rings in our room) so that he can summon us if he's having a partial seizure instead of stumbling around the house trying to find us. This has worked well and given him some extra piece of mind - but we are still struggling to sleep well.

Both Hubby and I get up several times throughout the night to check on our son and both of us have trouble getting to sleep.. Luckily our three boys all sleep in the same room so his brother called for us when he was having his Tonic Clonic seizure yesterday (he happened to be in bed with me when he has his first Tonic Clonic seizure).

The Emergency Doctor yesterday contacted our Paediatrician and was advised to give our son medication, which he will review when we meet him next week. This made me really angry, because the Paediatrician hasn't met us yet to get a full account of what's occurred and we haven't had any consultation or dialogue about what the EEG results mean and what our options are.

I got a copy of the EEG result yesterday and it says that it's highly unlikely to be Panayiotopoulos Syndrome and is in keeping with Rolandic Epilepsy, but the ED couldn't explain what the difference was (which is why I'm online today).

I told the ED that we would wait another week to consult with the Paediatrician before making the decision about medication (after all we've already been waiting over a month for him to get back from holidays, we can hold out one more week to make an informed decision). The medication has bad side effects and SEVERE possible side effects like 1 in 500 people aged 5yrs an older will develop suicidal tendencies (this is the info provided by the drug company with the medication)!

Then the ED told us that if we're going to weigh up the worst side effects of the drug we need to do it by considering the worst consequence of not taking the medication: "Which would be that he has a seizure lasting longer than 5 mins, has reduced oxygen to the brain and may be left with long lasting impact to his development etc due to brain damage. But I am not an Epilepsy expert or a Paediatrician so I'll prescribe the mediation, give you all the information leave the decision to you."

!!!

So far he has only had seizures at home, in bed, safe, with us nearby. He has had NO impact to his development, and is in fact excelling at school. He has, however, had a seizure each week for the past 3 weeks and this IS a concern but I want to find out more before I put him on medication as it can impact his behaviour, emotional & psychological state, and his ability to learn at school - which, so far, is much worse than the seizures, I think. Am I wrong here?

Hubby and I are both sleep deprived bundles of nerves. The information on this site and the feedback from other people has been really helpful. I am really frightened about possible side effects of the medication (carbamezapine) and terrified of the seizures getting worse, ie happening during the day or for a long period of time.

We love him so much.
We will meet with the doctor next week and get a second opinion if necessary. Trying to stay sensible about it all.

Submitted by Nicholetta on

Nicholetta

Thank you for your message. I can understand why this is such a difficult time for you and your family. We aren’t medical people but we do know how frightening it can be when your child has seizures.

You may have had your appointment with the paediatrician by now, and have more information. But it’s important that you have the correct diagnosis before starting treatment for epilepsy. Carbamazepine is the drug of choice for children with benign rolandic epilepsy who need epilepsy medicine. As you will see from our Panayiotopoulos syndrome information, carbamazepine, or sodium valproate can be effective for that syndrome. They both have potential side-effects, but they are ‘possible’ rather than inevitable. And lots of children take them without any problems. If they did affect your son, he could be weaned off them.

If it would help you to speak to other parents of children with epilepsy, you could join our online community forum4e. There are several thousand members, so it’s likely you will find parents of children with a similar condition to your little boy.

If you have any further concerns or questions, please email us at helpline@epilepsy.org.uk, and one of our advisers will try to help you.

Kathy

Advice and Information Team

Submitted by Kathy on

After 30 seen fits our 9 year old daughter finally got told she has nocturnal epilepsy,shes started on a low dose of epilim 11ml nd after 2 wks w have moved up to 22ml and in another 2 wks all being well we are moving up to 30ml.
Most of the time they have been in bed but a few times shes got up and them fallen to the floor,we too tought to begin with she was jumping on the bed.
She hasnt had a fit since we started the med (2wks ago) but goes to bed every night feeling shattered and tingly these are all the signs we had before fits.i hope as we build up the meds the tingles will calm down
Any advice/help/info would be great thank u lyns

Submitted by Lynsey on

Hi I have created a FB group page for parents of kids with BRE. I wanted a place where people could connect and support each other. I am new to all of this and would love more parents to learn from or parents that are also new and want to have support as well. Join the group if your looking for the same thing! https://www.facebook.com/groups/BenignRolandicEpilepsy/

Submitted by Amber on

My grandaughter who is 7 yrs old had on fit about three years ago and after necessary tests and evaluation including an eeg she was put on targetrol and she has been on this ever since. She has been having trouble concentrating in school and doing written work.Last week the targetrol was reduced by 50mg per day on medical advice and there seems to be an immediate improvement in her learning abilities. Is this a likely result of the reduction in dosage- please let me know - Thanks

Submitted by K Gururaj on

Different people respond differently to epilepsy medicines. But lack of concentration is one of the more common side-effects of Tegretol. So it is highly like the dose reduction will have helped your granddaughter feel more awake and able to concentrate on her studies. I do hope this continues for her.

Cherry

Advice and Information Team

Submitted by Cherry on

Thank you for your prompt reply reg my grand daughter who is 7 yrs old and has been on tergetrol 400 mg for the last three years after one episode about 3 years ago. She has had trouble concentrating and writing at school and a week ago the med was reduced by 50 mg with a plan to reduce by 50mg every 4 weeks and eliminate it. Even after the first reduction there has been a marked improvement in her concentration and behaviour and the parents will continue the reduction of med for the next three months. The neurologist is suggesting as an option an eeg before finally going off the med tegretol but the parents dont like this since she has to be sedated for this . Is it ok not to go in for eeg??? What precautions or preparations should the parents take in case there is an unexpected attack after the meds are cut off Thanks K Gururaj a concerned grand father

Submitted by K Gururaj on

Hi. I’m glad you found the reply useful.

Your granddaughter’s parents do have the right to say they don’t want her to have an EEG. But it could show if your granddaughter is still having any epileptic activity. If she is, coming off the Tegretol could mean she had more seizures. It’s interesting that your granddaughter would have to be sedated for the EEG. This is not the usual practice in the UK. Maybe they could discuss this further with her epilepsy specialist.

As there would be a slightly higher risk of her having a seizure while she comes off the Tegretol, it would be good for her parents to be a little more careful with her. The main thing would be for her to be careful around water, for example not having a bath or going swimming without someone nearby.

I do hope all goes well for her.

Cherry

Advice and Information Team

Submitted by Cherry on

I was driving my car, going to the grocery store my daughter was in the back seat of the car. I heard snorting, and i called out her name she didn't respond so when i looked back she was drooling excessive and pointing to her mouth she couldn't speak to me or make out clear words. This was the first time. I was frantic she said she was thirsty she came out of it quick. I gave her water. I took her home my husband and I decided if it happened again we were going to the hospital. That evening i went to pick my oldest daughter at the mall and I put my 8 year old in the car with me, all was well almost home i pulled over to the side when i saw her do the same thing, drooling and gurgling like sounds snorting, i panicked again she was trying to speak to me but couldn't. went to the hospital they did blood work and CT scan all was normal i was sent home, they told me follow up with dr and see a pediatric neuro specialist. The next day going to church it happened again in the car this time facial movement gurggling drooling she couldn't speak i cried all the way to the hospital took her to a different one, they did nothing said it sounds like a seizure. they said follow up with a neuro. why is this only happening in the car? why does she sound like she is choking. I feel so afraid at this point she sleeps with me, I'm even afraid to get in a car. Yesterday i took her to her pediatrician and i laid her down and away from looking at the road and she did well no seizure at all, I'm afraid to sit her up in the car. I told the dr he said it could just be a coincidence. Can this intact be a seizure?

Submitted by Jeanette Rivera on

Hi Jeanette

Thank you for your questions.

It must be difficult and frustrating waiting to see the paediatric neurologist. As trained epilepsy advisers, we can give you general information on epilepsy but we are unable to diagnose your daughter’s symptoms. As there are a number of medical conditions that can cause symptoms similar to epilepsy, the doctor will need a history of your daughter’s symptoms to help with their decision. You may wish to keep a diary  to help the doctor. It can also be helpful to ask others such as school to note anything they witness.

Some things make seizures more likely for some people with epilepsy. These are often called ‘triggers’. Triggers do not cause epilepsy itself, but they are things that make it more likely that a person with epilepsy will have a seizure. There are two triggers that could be relevant to a car journey. These are tiredness and flashing or flickering lights.

Some child fall a sleep during a car journey, for some people with epilepsy, their seizures are related to their sleep pattern.

Or as the doctor suggested, it may just be a coincidence.

I hope this is of help.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

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