Anyone have a child with Benign Rolandic?

Denise - posted on 02/18/2011 ( 14 moms have responded )

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My 3 yr olds new neuro said that he wanted to do another EEG before he diagnosed her but the spikes mostly at night indicate possible BRE. He thought she was a little young for this so he wasnt convinced until he saw another reading. I def want an MRI/brain scan to ease my mind of something else going on but evidently from the spikes they can determine if she def has the disorder. I despirately want to talk to other moms that have experience with this type and if she does have this disorder, what meds other kids with the same have been put on. Even though he said the prognosis with this is good and they usually grow out of it by teens, that is a long time for us and I wish someone would tell me not to worry so much...because I cant stop worrying. Especially with the seizure types being during sleep...I cant sleep for watching her. The EEG from her sleep study showed a lot of spikes in the center. She also has sleep apnea and scheduled to have her tonsils removed next week...he said that could have triggered her seizures but it wasnt causing the spikes that makes her prone. I would appreciate your input!!

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Denise - posted on 03/02/2011

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Oh my Jennifer...sorry to hear that but I pray she is fine! That was a fast diagnosis..took me months and two neuros to get the correct dx. My daughter is only 3 so I have a lot more years to worry...I am sure she will grow out of it as they say. Did they put her on meds yet? They have not put Kay on meds yet unless/until she has another seizure. We can only pray for no more.

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Kevin - posted on 01/07/2015

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There is no cure. but if he was diagnosed with BREC, the seizures will stop. My son is 16 now, taller than me. Super athletic ! Varsity wrestling in high school his year. Very active in all martial arts and MMA. Our doctor prescribed Trileptal for our son and that did work. Weaning him off was the hardest part. No that this was the scariest part of our life and I thought this was going to change him forever and make him miss the best things in life, this is not true at all. he is a normal 16 year old boy. If you have questions at all, please do not hesitate to reach out or post here. It's so scary but if you get some info it makes it less scary.

Kevin - posted on 01/07/2015

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Our son was diagnosed when he was 8 after his first few episodes and would have seizures more so when he did not get a full night sleep. If he fell asleep in the car, he would have a seizure, this was a certain but 8-10 hours of a sleep a night helped immensely. The doctor prescribed Trileptal, which i think help us as parents more than it did keeping the seizures at bay. Weaning off the Trileptal was a nightmare and my son has issues now from that medicine. Although it does help with seizures, it is also prescribed for many different mental illnesses. The drug "masks" alot of emotions. Emotions children learn to adjust to over a period of time through puberty, as soon as he was off the drug it was like years of emotions came flooding out. Misses a full year of school because of this. Now diagnosed PTSD BUT. medicine free (he refuses) Varsity wrestling team his first year of high school this year. Mui tai (spelling) kickboxing, Jiu jit su, Karate. A's in every class except Spanish (C+) !!! He has come a long way and we are super proud of him. We are currently dealing with some sleep rage. Not when he gets a good nights sleep but if he naps....oh boy watch out. no but really. Its scary. Thats not our son waking up from a nap, he is .....different. In pain, but not physically. Lasts from 15 minutes to a couple of hours (on his worst day) He now tries not to take naps until we can get a better understanding of what we are dealing with.

Jennifer - posted on 12/11/2014

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My son is 11. He has had 2 "seizure-like" episodes in 2 weeks in his sleep. The first one started with a gurgling/ choking sound, hyper salivation and slurred speech. The second one started with the same sound, but this time his head was shaking. Both were less than 2 minutes in duration. We have seen the neuro and have a sleep deprived EEG on December 30th followed by a 24 hour one. She suspects BRE, but of course I am sick with worry. I am not sleeping and am afraid of my own shadow. He seems fine during the day..never had any issues before....Nice to know you're here.

[deleted account]

Hi Denise.
How is your daughter going? My son has the same form of epilepsy and is medicated. Anxiety and lack of sleep are triggers for mild seizures....which are mild thanks to the medication.

Angela - posted on 05/29/2013

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My 10 year old son was diagnosed with BRE this past February. He had a grand mal after falling asleep. He had another one month later and then three in the past two weeks. We have been on an emotional roller coaster! Today I did the crazy mom and called his ped neuro twice begging for meds. I just couldn't take it anymore and his dad and have cried ourselves out. He wants to sleep over at friends and I'm a nervous wreck!! He is completely okay during the day so he is so persistent about going to friends' houses!!

So they wrote trileptal and tonight is his first dose. I'm praying and hoping for the best for my baby boy.

I'm so glad we aren't alone in this.

Bridgett - posted on 06/23/2012

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I have 3 kids and my youngest was diagnosed with BRE in Feb at the age of 2. He had a Grand Mal in January while taking a nap. It lasted over 20 minutes. He was put on oxygen and had Tod's Paralysis for several hours. Scary and heartbreaking are the only words to describe. He's only had one other since but very mild in comparison. His neurological suggested no mere unless we see an increase in seizures. His last 24hr EEG showed a decrease in "events" but he still twitches and jerks while sleeping. I know this because he sleeps with us. This is going to be a long journey but one that I pray he grows out of quickly.

Brenda - posted on 06/06/2012

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We are also dealing with BRE. My now 5.5 yr old it. She was diagnosed 2 yrs ago when she was 3.5 yrs old. Had two seizures within a month from each other. She has been on Keppra for almost two yrs. We actually go into hopsital next week for VEEG and to try and get her off the meds. She has been seizure free for two yrs but still has some 'seizure like' moments in middle of night- they have really decreased though.

http://benignrolandicepilepsy.wordpress.... is our BRE story.

good luck,
Brenda

Lauren - posted on 05/05/2012

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My 4 year old son was just diagnosed with this as well. He is not being medicated unless he starts having behavioral or learning difficulties or more seizures. We have been to two neuros and had two EEGs done. He had 5 small seizures in one day (localized to just his mouth) about 7 weeks ago and has not had any others that we are aware of unless they are occurring at night and are so small we don't hear anything.

We are hopeful that he will not have to be medicated. I was told that not all children have to be and have also read that. I would love to hear from other Moms that have children with BRE to hear how it has progressed for them.

We do not have any family history.

Denise - posted on 03/11/2011

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It is definate now that she does have this..no meds yet unless/until she has another. Thanks to all that responded..I appreciate your support!

Jennifer - posted on 02/28/2011

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My 9 year old was diagnosed today. she has never had them either until she had three on Saturday all while awake

Denise - posted on 02/24/2011

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No family history that we know of Susan..thanks for the link and I sent you a message on your page. Thanks again for responding!

Susan - posted on 02/23/2011

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yes I have a nine year old and a six year old with BRE. I have been through several tests with both my children so any questions you have I will try to answer. 3 years is a little young. Most children with BRE have onset seizures at between five and six years of age. Each of mine had onset seizures a few months after their sixth birthday. The good thing is with the right medicine the seizures can be controlled. My youngest has not had a seizure since starting meds and he takes Keppra and my oldest only has seizures when her dose needs to be increased she has been seizure free almost a year now and takes Lamictal. I know it is very scary. I had nights where any noise I heard would send me running to them. Is there a family history of epilepsy? My husband had epilepsy and outgrew it so most likely that is where my kids inherited epilepsy from. We also thought my daughter had sleep apnea she did not, but she did just have her tonsils removed last week.

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