Benign rolandic epilepsy
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
benign rolandic doesnt effect in the morning as my wee brother has benign rolandic epilepsy and when he falls asleep he fits every night for most of the night xxxxxxxxxxxxxxx
My 7 yr old daughter was diagnosed with rolandic epilepsy last July(2007). She had three seizures three nights in a row, resulting in an EEG and a rolandic epilepsy diagnosis. The seizures stopped after the third night and never returned until last night, she had a seizure. It is, coincidently, July again...I wonder if the heat has something to do with this or maybe there is something in bloom at this time of year that causes these seizures to come on...
Cheryl, have you been giving your daughter medicine? My 10 years old son was just diagnosed with benign rolandic epilepsy (yesterday)and I my husband and I are trying to determine whether or not to give him treatment. Even though the treatment would give us more assurance that he will not have it again (mainly in a situation where he could be harmed), we also have concerns about side effects of the medicine. What did you doctor advise? Did you get more than one doctor's opnion on this? Thanks.
Hi i saw a DR. and she said most Benign Rolandic seizures are at night i have them i am 12 years old and i have them at about 1 2 or 3 in the morning i have to take an MRI test saturday then an EEG test and for my test i have to get up at 1.A.M and stay up until i get back to the hospital the next day so thats what i have to do and my mom is by my side 24/7 =]
My daughter was diagnosed in Feb.2007. She continues to have seizures roughly 1 every 3 to 4 months. Her seizures begin when she falls asleep. Her neurologist has stated that changes in her daily routine can lead to seizures, such as summer break she goes to sleep at different times and is more tired due to playing and the heat. Carbatrol was given to her and it has played a huge part in lowering the frequency of her seizures.
This was a great article that touches on the important parts of Benign Rolandic Epilepsy. I wish I would have found it 2 years ago!
Cheryl,
If you daughter's sleep pattern has changed due to the time of year that may be a factor. Where we live the children are in year round schools. Every time my daughter is "off track" she has a seizure. The neurologist pin pointed that by having me monitor the physical activity and the times that she fell asleep. She tends to stay outside longer and falls asleep really fast because she is so tired. We switched back to her normal "school" bedtime and she is given 20 minutes to listen to relaxing music. We found ocean sounds to be very helpful, and then she goes to bed. She has not had a seizure since these changes went into affect.
I hope this information will help a little. I know I was willing to try anything to help my daughter feel like this situation didnt define her.
Best Wishes,
Apryl
i had a patient who is diagnosed as begnin rolandic epilepsy and who is 10 yrs old , had 3 attacks during this last year and all of them were when he was falling asleep and were generalized tonic clonic seizures.
I am currently in the process of trying to determine if my 9 year old son has the same. He had his first episode at his dad's house on 7/11 and the second while on vacation with me last week, 7/17. I just also learned that it is hereditary and my ex-husband's niece had it as a child. Their doctor told them it often brought on by over-exhaustion or over-stimulation. However, like you, I am very curious to know if being overly heated could bring on symptoms as well. When my friends and I saw him going through the seizure and then come out of it after being cooled down, we thought it could have very well been due to the heat. (It was 97 on land; I have no idea the temp on the water that day)
Cheryl,
Our son (9) has BRE and we have found that a good air conditioner definitely helps him at night.
All the best!
Giuseppe
My 9 year old son was diagnosed with BRE when he was 6. He has been on medication since. He has only had 3-4 (that I am aware of) Just this morning while waking he had a seziure. The only way I new is because him and his brother slept on the floor in our room last night. He hasn't not had one (to my knowledge) for well over a 2 years. His last one was in July as well. Just like the one last night and its July again. He had had a huge growth spurt prior to his one 2 years ago and at that time they uped his meds. As for this morning - not sure....
My 4 year old son has had 3 seizures within a month just all of a sudden this has started to happen every time they happen it be between the hours of 945pm-1145pm since then he has be to a neurologist he has had a MRI and EEG the doctor said there was no cuase to why he was having seziures but they diagnosed him with epilepsy.So they put him on medication but told me its still a small chance it could happen again. For me it is so scary to see my baby go through this i can barley cope with this. I've done my research but i cant find any support groups the doctor told me we dont have any here for epilepsy, can someone help me give me a helpline number so that i can try to cope with this a bit better.
My 6 year old son Christain was diagnosed with BRE July 22nd. He had two seizures that his father and I saw, one on the 9th, the other on the 13th... both within the first one or two minutes of him falling asleep, but both pretty mild. We have a friend that has grand mal seizures ever since a head injury years ago, and it scares me half to death to possibly have to see my child go through that. The mild ones were almost too much to handle. The doctor says to treat him normal and not let him sleep with us, but my husband and I are so nervous that he's going to have another one, that we dread bedtime and we're completely sleep deprived. We know we can't watch him forever, but our hearts wont listen to our heads. Tonight was his 4th night of medicine (Keppra) and he hasn't had anything since the 13th... (Knock on wood). I know that there are a lot of kids out there with much worse, and I am thankful that my son is not terminal, but I really don't like this. He's my baby.. :o( I am hoping that the medicine does it's job and keeps him from having any more seizures. And sleep will come eventually...
Hello,
my daughter had her first seizure after suffering chicken pox last summer. Two months later she had another seizure and Christmas time she was diagnosed as having Rolandic Epilepsy. Since then she has had about 9 seizures. One full body seizure which was totally frightening! I find they are mainly when her routine has been disturbed - such as school holidays or when she is over excited. I am trying diet as a means of controlling the problem - don't know whether it is helping but I have looked up ketogenic diet and I am ensuring my daughter eats at least one high fat item every day. eg bacon, egg, mayonnaise etc. I have noticed - and this may just be coincidence - that she has not had a seizure whilst we have been doing this. For me, I just want to get some control back as it is the worst feeling in the world watching your child have a fit and being helpless to stop it.
Good luck to everyone going through similar problems.
Helen
Has your daughter had a sleep test to see if her tonsils need to come out? My son had 4 seizures and I mentioned to his neurologist and he went for a sleep study, they removed his tonsils and he has not had a seizure since. the doctor that removed his tonsils told me he was 99% sure he would never have another seizure. He was 7 when they were removed. He is 13 now and has not had a seizure.
Since my son had his seizures, on occassion he seem to sleep with his eyes partially open... We never noticed it before, but we never watched him sleep this closely either. Has anyone else noticed this? It makes us nervous and we think it's part of the seizures, but we're not sure...
Nicole,
My son is 10 and was just diagnosed today. He has only had four since Jan 08. It is scary at age 10; I can only imagine at age 4. I am just now learning about this. Nicole, I will keep your son in my prayers. I don't know much about this yet, but I KNOW that the Almighty God can heal. He hears our prayers and He sees each tear that falls. I don't know about support groups, but I do know that the best support ever is the Lord. Again I will keep you and your son in my thoughts and prayers.
Jeremiah 29:11
I am very interested that your child has her seizures every July. My daughter has similar characteristics. She has had seizures for the last three years. They have all occurred in July, August or early September. I have not read anywhere that heat is a precipitating factor, but am glad to know that someone else is noticing a trend similar to my child.
Hi there,
My son Ryan was diagnosed with Rolandic epilepsy in February 2004 at the age of 6, he is now 10.His medication is Sodium Valporate which he takes twice daily. When Ryan has a relapse, his speech is afffected, so he starts a course of Frizium (clobazam) for 3 weeks, and we find that this brings his speech back. I must admit when he was first diagnosed, I was very scared, worried and blamed myself, thinking I had done something wrong, but my husband reassured me that it wasnt my fault, and that every thing would be alright, and I must admit he was right. Ryan is a real tropper and a copes really well, he is treated like a normal child and lives a very healthy and active life, I take my hat off to him.
All I can say to you all is I understand what you are all going through, and if you ever need to talk I would be more than happy to do so, and to share my experiences with you.
Hello Everyone!
My son was diagnosed when he was 3yrs old w/abscent seizures, 6/25/07 he had a change in his seizures. He had to be taken to the ER due to his breathing stopped. May 2008 he had one a week for 3wks, his neurologist increased his Depakote Sprinkles to 500mg. He was then diagnosed with BRE this May 08. No seizure activity until Aug 2, as he was falling asleep he had one then on Aug 4th he had another one that last for about 2mins which scared us to dealth. He was flat on his face by the time we made it to his room. It really makes them tired as if he has ran a marathon my neurologist said. I have notice that giving meds early evening instead of bedtime, allows the medication to get in his system. Last night, Aug. 10th we gave his meds at 712pm instead of 530-6pm, by 932 he was having seizure activity and again at 432am.
We are so puzzled because he has kept the same bed time all summer and we try and watch is activity very close to avoid getting overly exhausted. His seizures have really changed from the age of 3yrs old to 9yrs old.
If anyone as any advice, send it my way!!!!!!!
I am 38 and had Rolandic Epilepsy from when i was 7 till i hit puberty at 13, i have led a normal life with all aspects of life driving etc.. unfortunatly one of my children had it as it is usually passed down from generations. I had it from my Mother she passed it to me i passed it to my son he started when he was 7 and stopped when he was 14 (puberty later in boys). I only ever had them when waking up my son suffered both at night and in the morning.
I felt gulty for passing this on to my son.
I think there are 3 reasons to bring a seziure on high temp (illness), lack of sleep pattern and lack of food if you keep a regular routine this will help. I always had calpol handy and was probably too quick to give it to him!! anything to avoid it.
He had it for 3 years before we decided to give him any medication he was on Tegratol, when i was younger i had Epilem medication and i was reluctant for my son to have any medication because i know it did slow me at school alot but times have changed and things have improved since i took it. I was only sorry i should of let my son have it sooner as the more the body gets used to NOT having these fits with medication the better. He had no problems with his medication, today he has passed his A levels!!! (so proud).
He is now 18 and come christmas 08 he will be 5 years seziure free and able to join the RAF to become a firefighter (his dream).
I have just had a hell of a time trying to talk to careers about certain jobs you can and cant do etc... once you have a seziure over the age of 5 the forces dont want to know. But the RAF will consider cases with Benign Rolandic Epilepsy they will treat each case indiviually, thank godness. Under the new law the disscrimantion act, no employer can disscriminate against you for epilespy. All cases are treated on an individual basis though. other than his history he would be a 1st class candidate for the RAF and any other forces, he is fit healthy in every way i just hope he gets in he could fail at another hurdle so he will always have to be fit and healthy and try his best to be better than the best at most things in life. I am so proud of him as he coped with it so much better than me he could talk to his friends about without feeling he would get bullied, where i didnt tell my friends until i was in my 30's times have changed and thankfully for the better. Epilepsy isnt so much the taboo subject as it was years ago.
Aison,
Thanks for your comments. I still have not decided wheather or not to give my son medicine. The first seizure was early July and he has not had another one since. On that week, he was extremelly active, excited, tired...as we were on vacation and doing many activities. I am glad you mentioned your son did well on the medicine and had good grades and is doing well. I have seen 2 doctors, one says the same thing you alude to that the body learns how to react that way and the probability of having more seizures increases...the other doctor however said that he will overcome BRE with medicine or without and whatever we decided to do is fine. I am really worried about the impact the medicine might have on his well being and personality.
THANK YOU.
Hello from Sydney Australia. My son age 8 had his first seizure 2 nights ago just after he fell asleep around 10pm. It lasted nearly 5 mins with right-side paralysis. Interestingly for about 2 months prior he occasisonally complained of a numb tongue at bedtime. All his vitals checked out and rolandic epilepsy possible diagnosis pending EEG. Just read everyone's comments and wanted to note also that Tom gets very hot during the night at any time of year and that recently he had a lot of extra activities/pressure with soccer finals/chess tournament/school assignments and dad away from home. He also suffers from generalised anxieties, operates best with a regular routine and has a less that perfect diet (all good guilt fodder, eh mums?) so I guess there may be a link between some of these lifestyle factors and the onset of a seizure. I haven't explored this site fully yet but noted a link to depression. Has anyone any comments about this in relation to their child? or indeed their family history? On the medication side, for what it is worth I used to take Epilim for general mood disorder. As an adult female, my side effects were essentially weight gain. Good luck and god bless to everyone. I must say I am really thankful that this is likely to happen at home and not at school, for my son's sake. My daughter (10) did have a similar mild seizure at school during a hot day last year which was attributed to low iron levels. Interestingly my son is extremely low of iron and aenemic also. Does anyone else have low iron?
i think my sister have this type of epilepsy..all her symptoms fits to benign rolandic epilepsy except that hers occurs mostly every night during sleeping hours. her first attack happens when she was only 12 years old, her neurologist said that her seizure attacks will subside during her puberty. she was prescribed with lamictal by her neurologist but said that it is not actually necessary, so it depends on us if we will give her the medication or not. we decided to try to give her medication but my sister doesnt show any changes or development so we stopped her meds.she's now turning 18 next november..hope that she will outgrow this sooner or later.
My 8 year old son was diagnosed with BRE Friday (9/12). His first seizure was in April & he's had about 15 since then, but they had all been while he was awake. We haven't seen anything at night, but haven't looked...maybe we should. He started on tegretol Friday night & we have already seen the sleepy side effect. He has a diagnosed of PDD-NOS (on the Autism spectrum). Does anyone else have kids with these seizures & Autism? I have another son with Autism also & am now terrified that he will develop seizures too. There is no family history of seizures.
Hi,my son was diagnosed with BRE when he was 9, he was put on tegretol for 2 years and was seizure free during this time,the hospital then decided to take him off his medication due to the fact he had not had any seizures which was fine.
He was off the medication for about 6 months and suddenly while asleep he took 2 grand mal seizures,we took him back to hospital and he was put back on tegretol which again worked fine up until about 3 months ago now he is having partial seizures frequently affecting his right arm usually at going to sleep and waking up.
The hospital have told us that he may not grow out of epilepsy now which we are quite upset about,just wondering if any one else has had this happen.
My child has been seizure free since we took him off cow's milk 7 months ago. Could this be a possibility for helping your child? It is a very simple thing to find alternatives to help supply calcium these days and it could make a difference.
What an interesting set of postings! My daughter was diagnosed almost ten years ago with BRE. She had seizures at night (we could tell because she dribbled on her pillow) and during the day where sometimes she held her breath, dribbled, twitched etc. Once she got used to that and went on Epilim she has done well. She has always had to be aware of getting tired. However I am proud to say that she is now 18, still has BRE but rowed for her school nationally for 4 years (including getting up at 4:30am during the season); she represented her City and Country singing overseas in her choir and is now a first year law and arts student at university. She copes brilliantly with her epilepsy and has learned to recognise the signs and deal with them accordingly. She does get anxious sometimes and stress makes her feel quite ill but the unviersity has been fantastic giving her help and mentoring her through those times. For those of you who have recently-diagnosed children the choice regarding medication isn't easy. We talked to our daughter about it and she chose to take it (and still is) so that nothing interfered with her life - she has regular blood tests and check ups (sometimes aneamic but I think that's because she's a vegetarian) but other than that she leads a normal and active life. Good luck to everyone!! :))
Hi, I have just found out that my son has BREC and he is 5 years old. About March or April he passed out in school (daycare) and hit his head twice, later follwed by a series of nosebleeds that lasted for 45 min or so along with temperatures over 100 and headaches. After numerous visits to the ER and to the doctor's office to which they kept sending me home to say boys have nosebleeds and headaches just give him tylenol or motrin, in may he was diagnosed with viral encephalo menengitis and he was having temporal seizures at that time also. He has just been diagnosed with with Benign Rolandic Epilepsy of Childhood and I am floored. I don't know what to do except pray and look up this problem and learn as much as I can. I need to know as much information from other parents on this as possible and how to cope. I would appreciate any info or websites or anything that can help us. Thank you.
Donna
Hi Donna;
I sympothize with you... I myself have had encephalo menengitis and know how painful that can be, It took me aboout a year to fully recoved. Years later my daughter, 4 years old began suffering nocternal seizures. This floored me to, because as a single father, "my time" was when I knew my baby was safe in bed. The hardest time was before she was diagnosed,,, when I wondered.
My daughter is now 15 and has outgrown the seizures. She does remember them quite well, and it will comfort you to know they were not painfil or tramatic to her... although they were to me.
I found this site researching BREC for her school nurse. We discussed her recollectionj just a few mins ago, know that the memories do not haunt her or bother her... Your child will be fine.
I hope this helps alittle. God bless, and be strong.
Kirk...
My 8 yr old son has Benign Rolandic Childhood Epilepsy. We had his sleep deprived EEG last Thursday. He has seizures, where is eyes roll to the right side of his head every five to ten seconds. Sometimes he can go a few minutes or even an hour without a seizure. We meet with the neurologist on Monday the 13th to go over treatment possibilties. His peditrician said that my son should go on medication due to the frequnecy of his seizures. Any advice from parents whould be welcomed.
My son was diagnosed last month with BRE. He had a grand mal seizure on labor day night. The last seizure he had was almost exactly to the day one year prior. I was interested in others saying that their children had seizures in the same month or time of year. My son is 11 and is petrified of going to sleep. He has so much anxiety at bed time that he cant fall asleep which makes the whole thing worse and increases the chance of him having a seizure. Has anyones child talked about a sound they hear before a seizure, like a "scratchy" sound? He knows when he is going to have one and he screames. I dont sleep well anymore and I am so scared for him. Has anyone ever tried a sleep aid for their child? I take him to see the neuroligist in a few weeks and will ask all my many questions, but if anyone has personal experience with any of these please respond.
Sleepy Mom
my daughter has epilepsy and has had from less than 1 year old and she is now 5. Her consultants are not 100% sure whether at the most severe end of bre, panayiotopolous syndrome or even epilepticus partialis continua. It was confirmed last week that she also has associated ESESS. She was given epilim firstly then lamotrgine added, then since may also taking clobazam. I can reassure other parents that I have never regretted putting her on medication & have not have any problems apart from taste and not completely stopping seizures. We also have an alarm fitted in her bed which is activated by a fit involving arm and leg movement, which may not help my daughter as her seizures recently just involve her face. These monitors are available free of charge from an epilepsy charity called the muir maxwell trust. I just wanted other parents to know as it was reported in my local paper last week that an 11 yr old boy had died from sudep and had not been given any medication or alarm. Also make sure that your local epilepsy team train you and all of your family in how to administer emergency medication, which is usually buccal midazolam. All staff in my daughter's school were also trained
Cristi,
Our daughter was diagnosed in Summer of 2007. She is 10 . Hers appear to happen when there is a break from school. The doctor says it has nothing to do with it , but I do beleive it does. This summer we kept our daughter extremely busy with soccer camps and she was fine. I honeslty beleive the laziness of laying around watching tv and being on the computer can trigger these episodes. Pur daughter is not on meds and has not had a seizure until this past Sunday. She was sleepy and had been on the computer. Ours happen in the moring usually around 1-2 hours after her waking up. But she has never had one while we were out doing something. Always when her activaity was limited. I think a regular schedule and plenty of rest at night are a factor. Trying to maintain that schedule all year may help.
We have lost our boy to Benign Epilepsy
Read our story here, was told at the second day of his high school, that he would grow out of it, no medication needed,
http://www.southwalesargus.co.uk/news/3743794.Our_boy_had_tea__went_to_b...
Love you Ry. x
Hi
My daughter ella has just been diagnosed today with rolandic epilepsy.
her history is that when she was 2 she had 2 febrile convulsions, brought on by high temp and illness.
At 4 she had what were called, drops attacks. where she would be playing normally then all of a sudden would call out abnormally, that she needed a drink, then collapse. Although these were very upsetting to us, we where told by our pediatrician that they were quiet common and that they would probably not occur again, age defined. All the same, her dad and I where not satisfied so she went off for an EEG and it came back normal.
Again 2 years later, 2 more episodes although these attacks were more like epileptic seizures. so off again to have another EEG then a consultation with a neurosurgeon, who informed us that there was indeed some epileptic activity but not enough to medicate and that because they where so infrequent that she would most likely grow out of it . Medicating her would not stop the progression of the epilepsy ,if that where the case.We did try drugs at this point but she suffered side effects so we took her off the meds.
In the last 5 months she suffered again 5 more seizures she is now 7, has had another, sleep deprived, EEG. After much heart ache and worry, we are told that she does have benign rolandic epilepsy and a huge weight has been lifted.
We have still to decide whether or not to medicate, but lean more to not using meds and wait and see, adolescence seems so far away, as our doctor assures us that this is when they will most likely cease.
Any advise from parents would be very much appreciated, Ella is a bright little girl and we are afraid that meds may interfere with her learning ability..
Linda and Robert.
Hi Linda,
Your story sounds so much like that of my son's. he is now 8 and has been on a low does of meds for about four years now. We have had very good luck with the meds. He has been seizure free while on the meds. When he first went on the meds. it did seem to make him a littel grumpy, as time went on that seemed to subside. He has been doing ok in school.
Hello
We have a son that has an almost identical profile to yours....almost 11yo, first seizure 2.5 years ago, and then now 3 in last 3 weeks...we also have appointment in 20 days with neurologist
Interested in your comment about not sleeping as we have the same problem. Did you get any advice on sleep medication or aids?
Appreciate your thoughts & support
David
John and Marie (?) - my thoughts are with you following the loss of your beautiful boy. I have posted above regarding my daughter (who turned 19 last week) and what happened to your son is what I feared from the moment my daughter was diagnosed. I hope you're able to draw some peace from the fact that he'd gone to bed so happy and full of life and that's the memory you will have of him. My thoughts and prayers are with you and anyone else who has lost a child or loved one to this illness. We just don't seem to hear much about it do we?
hi my name is kirsty am 23 and a mother to 3 children, my eldest child age 5 was diagnosed with BRE about a year ago having had a cuple of epersodes of facial sezures only effecting the right hand side of her face and this has only ever happened once whilst been awake the rest of the time in her sleep, the doctors decided to start her on some anti epileptic medicen Carabmazapine, this is where the worst time of my life begun my daughter had the most sevire side affect the doctors have seeen in 20 year and spent nearlly 3 week in hospital unable to walk talk use the toilet eat and drink. this was the most frightning time of my life but thanks to help of the doctors and nurses she is now fine in herself although still a bit scared from the sevire rash. This experience compleatly changed my views on anti epileptic medicen and it took me a while and talkings to the doctors to decide to put my daughter on some more medicen deciding it was for the best that she did continue they put her on sodium valprate the first cuple of week of her taking this medicen was so scarey wondering if she was going to have any side effects to this all been well she didnt and is doing quite well, although my life is still turned upside down i carnt sleep myself scared am going to miss her having a sezure as sudden death in epilepsy was explained to me our last visit to the hospital, i am scared to death i knw this problem is not going to go away but how am i going to bring myself away a bit stop worring so much let my little girl go play with her friends without worring obviously am going to always worrie but the strain i am so scared please if anybody can help me come threw this a bit please all comments are well appriciated
My daughter is 10 years old. She had her first seizure in 2003, and has only had 1 or 2 a year since then. We stopped going to see her neurologist in 2006 because she was doing so well. Now, she has had 3 seizures just in the past week! They have all been at about 10:30pm; the first one seemed so different than any seizure I had seen; it seemed like a Grand Mal - her head was convulsing; eyes rolling in the back of her head. Very scary!! The last 2 this week have seemed more like the Benign Rolandic seizures, but it concerns me so much that she has had 3 in a week. We do have a lot going on in our life which I wonder if it is contributing to them happening right now; my mother passed away on Oct. 18th; we're doing renovations on our house and she and her 13 year old sister are sharing a room; I think she's starting puberty. Her neurologist called me back yesterday and basically prescribed medication over the phone. I'm very nervous to put her on medication, and insisted that he see her; so we have an appt. tomorrow. Does anyone have experience with their child being on Keppra? Thank you!!
hi,my 11year son was diagnosed with BRE last wk.It started last june where he had what we thought was a fit at 7 oclock in the morning as he was awaking from his sleep.We were told it was aone off thing so we got on with life as normal.Exactley 1 year to the day it had happened it happened again,but this time it was as he was drifting to sleep not knowing what it really was what he was experiencing i reassured him and kept him calm and he came round quite quickley.It happened again that week twice 1 morning at 5 o'clock then again at 8'clock.By this time i was a nervous wreck,bearing in mind all his scans had come back as perfect.We were convinced by doctors that these were panick attacks he was experiencing and to treat by helping him get his breath back with a brown paper bag which did help.Joseph has always been aware of the attacks and has manged to get out of bed to get me this is why it was thought to be panick.are anyone elses children able to get out of bed and are aware at the times of the attacks happening? When the attack is happening he seems to be hyperventilating not able to get that breath when we use the bag after maybe 20 30 40 seconds he gets that breath and starts breathing normally.could panick be linked with the epilepsy?
After the episode in june there was nothing til sept the week he went back to school.Like many people say change of routine could be a factor.Only this time it was quite bad i heard a bang in joes room and found him on the floor having the attack not knowing how long it had been going on for before i found.He was hyperventilating quite fast and dribbling down one side of his mouth.Within minutes of trying to calming him he passed out, me still thinking these were panick attacks.This time he needed oxygen and was taken into hospital.Although once the attacks have happened within minutes he does come round quite quickley.This time the doctors decided to do another scan after me pushing for it.After talking to about 5 doctors all diagnosing the same thing panick attacks.But what i couldnt understand was why always in a morning or on a night.Again after the episode in september ther was nothing until last sat night which was very mild i was in bd with him like every night lately after 5 minutes of being in bed he sat up but looked fine then i realised it was about to happen i got the bag and held it to his mouth and he got the breath after 20 30 secinds so i do believe the bag does work.We then went for the scan results last week and they confirmed he has BRE.I have decided not to give him treatment just yet and to see how he gets on.I am going to try and live life as normal and when an attack happens deal with it the best i can it is scary and it is worrying but with plenty of reassurance and support towards joe i think he will get through it the same as all the other children going through it.He did lose his nana 2 years ago and i think this has had a major effect on him.Thanks for reading.
My son is six and has been diagnosed with rolandic epilepsy. He has always had difficulty with speech. Has anyone else noticed this with their child. Doctor's couldn't give me a reason why he had speech difficulties, when he was younger. He has nocturnal seizures, usually in the early hours of the morning. I have also noticed that one side of his face seems to freeze, when he tries to wake up. He is concious, when this is happening. One eye and half of his mouth won't open. He tries to talk, but the words can't come out. Has anyone had that happen to their child. What can I do to help him?
My 11 yr old daughter was diagnosed December 2nd with BRE after 3 seizures in a 2 week period. She was overtired the night of the first seizure. We had family visiting for my sister's wedding. Cousins she doesn't see often were staying over. The first 2 seizures were at night while she was watching a movie with the lights off. The third seizure happened at school during a play practice. The auditorium lights were being turned off and on for dress rehearsal. The flashing lights in a dark room were the only similarities that we've noticed between all three episodes. I was concerned she would seize during the EEG, but she didn't. She was very relaxed and comfortable during the test. She was diagnosed with anxiety in September after a year of stomach issues and a day when her lips and tongue were tingley and numb. Now I think it was associated with BRE. I am going to meet with her peditrician for his opinion. She has had difficulty getting to sleep at night for a long time. This has gotten worse after the seizures. She has dealt well with all of this. Even being picked up by an ambulance when she seized at school. I do see that there is a correlation with seizures and being over tired and stressed. We have chosen not to medicate at this time until we research all possible side affects. We are trying to set up a regular bedtime schedule that is more relaxing. Not easy with 7 children at home. I appreciated reading the article and all the comments. It was very helpful to know how other parents have helped their children get through this. Thanks to all. God bless.
Hello all!
I am so relieved to know that I am not alone in this. This week I went to wake up my 5 year old for school and she went in to a 7 min grand mal seizure. This was by far the worst thing I had ever seen. It lasted so long and there was nothing I could do. I called 911 and she was still seizing when the paramedics arrived. I am in medicine and all you know flies out the window and you become a crazy mother. After two days in the hospital we had the EEG which for those without faith hold on to your hats. First this is a child that never naps and runs till she drops. Here we were in this room with all these things attached to her head and I was next to her in the bed and she just drifted off into sleep. It was about 12 noon so it was amazing. During the test she did what she has always done, twitched in her sleep . I told the doctors about this and they all kept telling me it was probably due to temp change. Its so funny to look at a doctor and say I am in medicine and I know that was not what this was. During the EEG every twitch was a seizure, small but very active and there. She has had this for as long as I can remember and its hard not to beat myself up because there were about three times in the past two years I have said " that really looks like a seizure" but I would shake her and she would yell at me for waking her up. I just thought it was heavy dreaming. Also they said that the likely hood of another seizure without medication is 95%. I am in the US and my daughters biological father is from the UK, I lived there for some time. I know the culture is different regarding medication, and I respect that. Old medication for epilepsy had a lot of side affects. The drug my daughter is on is KEPPRA, which has the least amount of side affects out there and is non toxic, meaning it doesn't run through there kidneys or liver. The only side affects I have seen are mood related and can be controlled. Actually I have found in the short time she has been taking it, when it is time for the medication that is when the unstable behavior comes out. Its as if it keeps her level. She had so much activity in her brain that I can see how it may make you moody. To not medicate your child is your choice but to take a chance of death is not an option for me. I can see her starting to go into the twitch and the medicine stopping it, and this is new to me. I really want to know how I will ever sleep again. Knowing that this only happens then. I am praying that it is benign rolandic, as her biological Grandmother had it. I wish I could hug you all, because I know that to watch your baby go through this is agonizing. I will leave you with this. In my stay at the children's hospital I was so scared for my baby, but looking around I was so thankful that this was treatable and that those other parents were not me. Please pray for all of our babies and parents with faith and love we can get through this together.
Hi there my 7 year old son has just been diagnosed with BRE from the EEG and we are trying to decide whether to put him on Tegretol (carbamazepine) so was wondering if you are now treating your son? The consultant has batted it back saying we need to decide as family as they don't necessarily treat it. Has anyone had any negative side effects on Tegretol? It is so hard deciding for them and knowing what to do for the best.
He has had 7 episodes in total 6 of which were between end Aug this year and beginning Nov) we have been ok for last month but am absolutely on tender hooks all the time about it happening again. His have happened within about 1/2 hr or so of going to sleep - he usually runs onto landing and one side of his face is paralysed/droopy and he's trying to speak it is horrible to see your child look like that isn't it. It happened once at about 5am when came into our room. He does not seem that worried about it afterwards just says was trying to speak to us and as our consultant says it is worse for people witnessing it. He is a child who has very active mind and can take a while to drop off to sleep which of course makes you more paraniod it is going to happen. It is interesting reading how other people had a cluster of attacks around school term times starting etc. As he did start junior school this Sep and that's when we started having a cluster but am very concerened about it happening now Xmas coming up and all the stuff going o. We do try to have a good routine as I too wonder if doing too much/overtiredness doesn't help but it's hard to get a definite pattern and you have to let them live their lives.
It is good to know we are not alone
Jane,
Our son was diagnosed with the same two years ago when he was seven. He had some partial seizures as you described and one big seizure at school that was full body and the teacher said lasted 30 secs to 1 min. We put him on Tegretol which he had an allergic reaction to. It was very hard to put him on medicine. We switched to Keppra and a year later since he was on a low does, at doc's advice, we took him off. He went another year seizure free. He is now nine. Last Sunday he had a major seizure at home aroung 10:30pm. We were fully caught off guard. His brother whom he shares a room with came to us and told us he was having a seizure. He fell out of the bed and received a very bad golf ball size welt on his temple. He seized for 4 mins. He went unconscious, vomited, turned blue. It was horrible. Much more severe than the ones he had two years ago. We had the EEG and saw the neurologist today. He hadn't outgrown it yet, and now we are committed to two to three years on the anti-seizure meds. It was pretty scarey. Although the doc says the seizure won't hurt him, it's hard to believe it when it was so severe. What could hurt him is where he is when it happens. We were always reluctant to put him on the meds but after this experience and realizing that this isn't going away until he out grows it in his teens, we feel better about the meds and want to protect him.
Hope that helps.
Jane,
As Clare mentioned it was when the medication was not given that the violent seizures happen. The Keppra is interesting. It takes some getting used to as to the dose, but with patience it is great. My daughter is irrational and very unstable when the medication is wearing off. Within 5 min. of her getting the next dose she becomes herself again. Its as if her brain is rapid firing and she over thinks things and obsesses about things. She says things like I don't know why I am yelling. But when the medicine is in her its amazing the change and how quickly she stabilizes. Also the issue of problem getting to sleep was the same with my daughter. On keppra we have reading time and soft music really helps. I have not had a problem putting her to sleep since she has been on the medication. I thinks it due to the activity of the brain. It is very visible at the alpha and theta stage....go to http://www.dreamviews.com/sleepstages.php its interesting. Since the seizures happen normally at this time in the sleep its great to research it. Also go to
http://www.rxlist.com/keppra-drug.htm , it explains a lot about the medication. If I can help at all let me know. I know its a hard decision but it is the only option as far as I am concerned. A majority of reported major injuries or deaths from BREC are children that are not medicated. Thats just a chance I am not willing to take.
My son stated having seizures in August 2 years ago, he was 8 1/2. He had a 2 grand mal seizure which lasted over a half hour. This happened in the morning. Very frightening, he was taken by ambulance and admitted. An EEG was done at the hospital the next morning and they told me he would definitely have seizures again. I guess they said that because the test showed activity and he had just had a full night sleep. We still chose not to put him on the meds right away. It was not until Dec (his b-day) that he seized again.We went back to the nuerologist and my son told the DR. that he wanted to be put on the meds. He did not like the way he was feeling numbness in the mouth. He still has seizures seems in Dec and the spring time. He just had a seiure the other day his b-day again. Seems stess and excitement may be his problem. He is taking Trileptal for 2 years now and has been doing well on this medicine for the most part. several changes in dosage. I notice he is moody when the medicine is changed but once his body adjusts I see so side affects. This medicine went generic and he took that for about a month and he started seizing again. So be ware of generic meds not all kids do well on them. If your child is old enough to have a say do like the Drs do and ask them what they want to do about the meds. I was reluctant to put him on them because medicines scare me but he is on them and doing fine. Has anyone noticed there kids having difficulty with reading? My son struggles with the reading and they want to put him in special ed even though he does well on his classroom tests. The Dr. advises not putting him in I was wondering what other parents have done. As one parent said at least this has a treatment and is not life threatening. I am grateful for that and I sleep better at night.
My eight year old daughter vomited in her sleep in August whilst on holiday - she was hot in the day and seemed a bit off colour but wouldn't give in. She went to bed and about half hour after falling asleep, vomited and seemed to be unaware of her surrounding. Her temperature was high and we tried to cool her down but eventually she seemed to be having trouble breathing and we called 999 as she seemed to be fitting and I really thought we were going to lose her. As we where on holiday in North Wales and on a holiday camp, the ambulance seemed to take forever and an hours drive to the nearest hospital had to be endured. She vomited again in the ambulance and in the hospital where she was admitted eventually about five in the morning. They carried out blood tests which all came back clear and she was released about ten. We had a worrying few weeks wondering if she was ok but now after four months of health, she suffered the same kind of episode last night and once again we had to call an ambulance this time having to go Whiston Hospital. Both times, we have been away from home and she has had late nights plus lots of activity then vomited after falling asleep. Her temperature last night was more or less normal, but she was disorientated and trying to be sick whilst seeming to fit. This is obviously now very worrying to us and as my husband was diagnosed with Epilepsy approx thirteen years ago, we are concerned that she has inherited the same. We have to return home on Sunday and have an appointment with the doctor on Monday so hopefully we will be able to have her checked. I have read the comments posted hoping to find similarities but cannot find a post where a child has vomited .... has anybody had experience of this?
My daughter is 6 and was diagnosed with BRE in October 2008. Previous to that she had had 3 seizures, the last one frightened me so much I took her straight to hospital and ended up spending the night there with her. Since she has been diagnosed with it she seems to have had more. They always happen between 6 and 8 in the morning, I hear her making a gurgling noise in her throat and when I get into her bedroom she has her eyes wide open and fixed, she is dribbling and her head is making jerking movements, also sometimes her arms and legs do too. I was given the option of medication but at the moment I am very reluctant to put her on them. I was talking to a friend who's son also had BRE and he was put on medication and she said he changed, became moody and in a world of his own most of the time. This really worried me as my daughter is so lively and outgoing I would hate for anything to change her. Also I have noticed that I can be talking to her and she will stop for a few seconds and then carry on, I used to think this was just daydreaming but her teacher has also said she has done this a few times and now I am wondering if they are absent seizures. It is so difficult to know what to do for the best but I think at the moment I am going to see how it goes. She doesn't know anything about the seizures and she doesn't remember that she's had one and always goes straight back to sleep afterwards. The consultant has recommended that no medication at the moment but if I feel any different about it I can go back and see them.