Benign rolandic epilepsy

Hi, I have a 8 year old daughter, she was diagnosed with BRE 3 years ago,
she's been taking epilim for almost a year but the doctor recommended that we increase the dose, 3 weeks ago, as the blood test showed that her levels of epilim isnt high enough.
since then she look tired and sleepy, get angry really easily, the teacher notice that she's stop being bubbly (thats how she put it) and shes having trouble doing her homework. I really dont know what to do as i notice that seen she turns 8 the fits at night are happening more often.

My now 10 year old child had another huge seizure, hemi grand mal, exactly 2 years after the first one. There were about 6 clusters of smaller facial seizures in-between. The seizure occurred at 4.30 am and it lasted about 15 minutes. She was jerking on the entire left side of her body, she vomited, and her left side was paralysed/dysfunctional for about 15 minutes after the seizure. She had severe headache in the recovery phase.
There were mild behavioural issues at school and at home in the weeks before the seizure, she seemed pale and listless at that time, she was either strangely calm, or highly irritable.
She started treatment with Suthiame two days after the seizure. She seems to tolerate the medication well. Her behaviour, concentration and grades have improved markedly since being medicated. There was a very small seizure just after falling asleep the night after a very hard core math test. We mostly hope it can prevent another hemi grand mal.
The syndrome definitely affected her behaviour and cognition, transiently at least. She is one of the cleverest children that occasionally produces some of the sloppiest work imaginable, her teacher so charmingly puts it. He thinks it wax and wanes with her level of interest, but I know it actually goes up and down with the amount of seizure activity. The medication has certainly evened things out, without any scary side effects. I can recommend Sulthiame any day.
If you looked at Miss Total Popularity, you would never in a million years guess there was more than plain naughtiness and laziness behind her worse moments in school.
If it stays with a diagnosis of Rolandic epi, I know that despite the hard times, we have actually been lucky.
Take care yourselves and your kids.

Hi everyone,
My 3 yr old has just been diagnosed with BRE on Monday, 2 days ago. He had the scariest night of my life in february this year, it also happened to be the day he read his first book completely by himself cover to cover. He wanted to read it over and over he was so pleased. So I let him and read the book in my bed. I'm not sure when he drifted off because I got out of bed to fold and put away some clothes. I was in and out of my room and remembered hearing a sort of clicking sound but thought nothing of it and then was about to have a long relaxing shower. For some reason I thought let me check on him before I go to the bathroom. I looked at him and thought, 'aahh what are you doing little one?' it looked he was trying to straighten his arm but was jerking so I thought it was caught on the duvet or in the arm of his clothes. I stroked his arm to straighten it and smoothed it down to his hand which was spasming I thought maybe he had a trapped nerve. So I reached over to him as he had fallen asleep with his back to me, turned him and saw he was absolutely dripping with sweat, the pillow soaked in saliva. The clicking sound I had heard was his forced breath through his mouth which were forming bubbles. I stripped him down to his vest and picked him up to try rouse him all the while his arm/ hand is twitching, he' drooling I think omg he's having a stroke. I'm calling him, he's just vacant. I'm holding him to my chest saying, ' come back to me please come back to me. Mummy's here come back to me' I'm hysterical and call for a ambulance my mind is leaving me and I struggle to even remember my address. It was the scariest loneliest night of my life. I was barely dressed getting to the ambulance, they told me just bring my keys and purse. They give him something analy and give him a nubulizer to bring up his oxygen levels. I'm thinking omg has he sufffered brain damage? He finally cries and comes to but can't get any words out and oneside of his body can't move or use. I start to sing the Mickey mouse song to him to calm him and engage him and bless him he really struggles to keep calm and sing. At hospital he sees the doctor and inside I am freaking out as he is dribbling from one side of his mouth and it is apparent half of his body he has no control over and he is delayed in responding. Doctor reassures me and says it lookalike he's had a fit, we need to give the brain time to recover. He was admitted to run tests and observe him. She told me because there was no high temperature noted with him that it was unusual so she needs to check there isn't anything else sinister going on. A few hours later because he had recovered back to normal was entertaining his nurse drawing pictures and colouring in, writing his name, so quickly she wasn't ordering an MRI but would book him to come back for an EEG to have a look at what is going on in his brain. So in the early hours of the morning I was able try and process
what happened and attempt sleep next to his hospital bed.
Everything seems back to for him, but for me I can't bring myself to sleep on my bed for about a month. Plus I don't want him to sleep alone. Also whislt we were at hospital the nurse notices that his loud snoring isn't normal but probably points to enlarged adenoids which is causing sleep apnea. So I'm even more paranoid about sleep time. Waiting to see ENT consultant. So reading up on that it makes sense why his speech was always so clear. But just now whilst writing this I have put together what the speech therapist assessing him had said. He has the words, quite advanced for his age he's more than fine. What he is struggling with is sentence formation and is quite cleverly mumbling at the points where he realizes something is missing. I remember laughing when she said this, thinking oh wow that's what he's doing. So we did a few sessions and had exercises to do and his confidence has improved and his speech is flourishing. This diagnosis coupled with other events has made that side of it him more understandable now.
I am also extremely glad that I made the effort to engage him learning wise in a fun way. I noticed as a baby he had a phenomenal memory manual dexterity that surprised me. To the extent I did have to warn friends and family what they did in front of him! I found out by accident he was a wizz at puzzles, I bought him a 32 piece handy many 57by49 cm. It was a bit before his 2nd bday and even though it was 3+ I thought it would be nice for him to look at and play around. Long story short I kept coming back into the room to see a completed puzzle thinking to myself 'did I finish it'. I was puzzled! Then thought let me take a few random pieces away and come and see what's going on. I wasn't losing my memory, he'd completed, and could do it in record time. I would give him a piece and asks where does this go? and he would instinctively know. He never looks at the boxes when completing, he just figures it out, doesn't do the let's build the edge first ever. He learned songs very quickly. Is an artist in the making, his pre school teachers have said he would Disney competions and she would love to see where he is in a couple of years. He is reading and writing very well. Enjoys signing his name to his pictures and if he's done one for one of his little friends he will write their name on it too. As a baby I nicknamed him the thinker. Friends always said he looked like he was masterminding something, the cogs working out how things work. He worked how to use my I phone before me and do things to it and to my brothers phone that I couldn't work out, and I studied engineering and architecture at uni! I'm glad that he can sit down and concerntrate, write and draw, and enjoy numbers. I think this has made his diagnosis slightly easier to bear in that respect but I'm still processing it all. But the future has definately shifted. I am sad about the diagnosis as I will try not to let him be defined by it. He is still only 3 so his nursery have been informed and I will inform the primary school he starts in September. His consultant doesn't want to medicate which I'm happy with and will have 3- monthly check ups. If I notice any changes in him developmentally then to call up.
My question is when and who did you tell about your childs diagnosis? Did you notice things that hadn't made sense before? How did you get support from schools if your child fell behind?
I have just remembered, did anyone notice a change in toilet behaviour a night. My son has happily gone through the night without needing to wake up to go since he was 1. Whereas now he has had a couple of accidents and now needs to go during the night. I noticed this because I conciously made him use the loo before he went to bed and that night he still needed to go twice. I don't know if it's to do with BRE or his enlarged adenoids because apparently it is a symptom for that. I'm just confused it's all so new, I feel like I'm replaying everything in his life so far. I just know.
I have only experinced the siezure so far, I don't want to become a paranoid wreck.
Thankyou for all the shared experiences. It means a lot because it is all so new to me.

Hi,

Anyway, I started having rolandic epilepsy when I was 16(as diagnosed by my neurologist), and now I'm 21 and still I have it, is this normal? I was born 4 or 5 weeks premature, could that have something to do with it? But still, why so late in my life, this completely screwed my plans in life of joining the military and now I'm struggling just to find a decent career with 2 years in the meteorological field, nobody wants to hire me with that however my seizures though starting to space out a bit more(usually 1-2 a year as opposed to when I was 16 roughly once every 2 months or so) what should I do as treatments go? I'm currently on "Oxycarbazepine" which is a generic for Trileptal, however I'm thinking about going the way of a neurostimulator, so I can live life without worrying about carrying pills around in my pockets and run the risk of the police asking questions etc.

My daughter was diagnosed with BRE 2 years ago. She had had between 5 and 10 occasions over the previous year when she had had her 'funny mouth', as she put it.
It took 8 months and eventually a sleep deprived EEG to identify BRE. I was amazed that the medical staff hadn't identified it at the start - once I read your website I knew immediately; her symptoms were so classic.
The consultant was keen for us to put her on medication but as the episodes had not bothered her particularly, we were reluctant to do so. Even more so as she has dyslexia and we didn't want something that might unnecessarily make learning more of a struggle.
We are so glad we made that decision, as since her diagnosis she has had no further episodes, even though she has had plenty of situations that would have been classic triggers (heat, short on sleep, disrupted bedtime routine, extra physical activity, all at the same time!). Praise God that she has been free now for over two years.
I just wanted to let some parents know that it isn't always a bad outcome, in fact, having read up quite a lot of books, it seems that often it is a good outcome from BRE.

I had BRE when I was a child, and I'd like to reassure other kids out there and the parents of sufferers.

When I was around 9-10 yrs old, I had a couple of seizures (left side of face tensed up and contorted upwards, unable to speak, pins and needles on my left side) some very classic symptoms of BRE.
I can vividly recall the incidents, and that I very nearly scared my parents to death, as each episode would last for about 2-3 minutes, and strike with no warning at all. Following all the scans and the consultant appointments, the general conclusion was that I had a form of epilepsy, that would very likely disappear when I reached adulthood.
I have to say that although my teenaged years were blighted with the worry that these seizures may strike at random, and I would god forbid be in embarrassed in company - the doctors were right, I never had another seizure. I stopped taking the epilem when I was about 15, and (big touch wood) I've never had an episode since and I'm now 36. If you are recently diagnosed or have a child that has had these scary episodes, I hope that my experience assures you some. Certainly in my case it was obviously a puberty development phase.

My daughter was diagnosed with epilepsy 2 years ago. She is now nine. Her first seizure was a biggy. We had no idea what was going on and we ended up calling 911 and having her taken to the hospital. Before meds, her EEG was "Very Unusual" and we were told that perhaps she has two types of epilepsy. She has both generalized spikes and partial activity. She was put on keppra with an ever increasing dose. She weighs 65 lbs and is taking 1000 mg 2x a day. Her EEGs continue to be abnormal, but not as bad as the first. She has a normal MRI. I have since done a lot of research. She has a seizure every 6 to 7 months. The reason I am posting here is because her seizures look just like "BRE". She starts with drooling and what she calls "tongue twisting". She cannot talk and just slurs and gurgles. She has some facial twitching and arm movement. Only the very first generalized to a Clonic-tonic all the rest have ended on their own after about 3 or 4 minutes. The weird thing is in all of these seizures besides the first she was 100 % alert and could tell me everything that happened throughout the seizure. Does this sound familiar to anyone? The docs have never mentioned BRE to me, but I would love the idea of the strong possibility of her outgrowing them. Sorry for this ramble and thanks for any input you might have!
Cathy

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.

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, 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.

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