Hi, my name is Linda. My 7 year old daughter was just diagnosed with BRE. I'm shocked and very frightened. She had two seizures a night apart one moth ago. Nothing else since. Her seizures consisted of her "mouth shaking" and a gurgling sound.
Lately, even before the seizures she jerkes when she falls aslepp. When she moves around at night she makes a sort of sucking motion with her mouth but it stops when she settles in.
I haven't had a good nights sleep in month and I'm terribly on edge. My own daughter makes me nervous now. Is as if she's a time bomb ready to explode. I have no idea how to act or treat this.
Should I get another opinion. Her doctor doesn't recommend an MRI because her EEG result was cut and dry.
I'm not sure if I should tell Ava (daughter) because I understand she may never have another. The seizure scared her and I don't want her to be afraid to sleep. On the other hand, there's a chance it will happen again.
What about medication? Should I wait for another seizure?
Will the seizures only happen at night?
Her neurologis is like a robot. He makes me uncomfortable.
I'm scared and confused. Any feed back would be appreciated greatly.
Thanks.

Hi l know what your feeling too well!!! I still havnt had a good nights sleep in 2 years (just over)!!!! Its terrifying. My daughter was just dxn a few months ago with left temple epilepsy (sorry l still dont know all the fancy terms!! This is a fantastic place and you will meet loads of us in the same boat. My daughters just about to start meds im in turmoil about it l dont know whats for the best l says you shoudl and one says its your choice! I dont ahve much time today but l will come back and post later hang in there we are not alone x niecsey ps my daughter was 7 too when we first witnessed one!

ive had to come straight back to you after reading your post again my little one too makes them jerky movements and sucky noises, and hers happened in her sleep well 4 of them have last one was different although it was bed time she got confused thought she had jamas on etc etc was wondering around l had no idea what was happening thought she was tired and that was it boy it scares ya my daughter had the mri which was clear and the sleep deprivation test showed the epilepsy. Hopefully it never happens again to your little girl but noone knows with this. I try not to talk about it too much in front of my little girl cause is scares her too triggers ive noticed for setting them off in my little one are lack of sleep 9late nights) fear stress excitment also its good if regular meals are kept up. Im still learning too and wish l could help you more l will be back later take care x niecsey ps l have just put her back in her own bedroom after nearly 2 years off and on in my room and bought some baby monitors so l can hear everything and l do! Im up and down all night but its a small price to pay for reassurance x

Mom2bird, It is so hard to get a diagnosis and fear what might come...

ON the good side. BRE is a GOOD diagnosis if there is such a thing. It is usually outgrown by puberty. Seizures tend to stay mild. Most neuros do not treat it unless seizures become more frequent or start having them in daytime as well. You can wait to decide on meds. Second opinion is good if it makes you feel better. MRI is often normal with any epilepsy diagnosis. Again, it would not hurt to have one to make sure there is not something else lurking.

My suggestion is to keep a journal of her seizures and if you see anything else odd that worries you. Do you take her back to the neuro at some point? Can you call him if she has more seizures?

(((hugs))) hang in there Gin

Thanks for the replys. Do your children have BRE? Ava's primary doctor was very happy with her diagnosis. She explained all the same reasons as Kayakmom. The neuro doesn't think an MRI is necesarry. The EEG results were that definite to him.

She's only had two seisures a night apart. She told me her mouth was shaking, she was conscious. The next night was only seconds, it was a gurgling sound, lots of drool and slurred speach for about a minute after. No limbs or body involved. Both right after she fell asleep. Scared the hell out of me.

She's been seizure free for 1 month. I'm not going to give her medication unless she begins to seizure again. I haven't told her about her condition. I'm praying we've seen the worst of it. Although I know it's unpredictable. I'm prepared.

Are your children medicated? What are your stories?

My Kids do not have BRE> MY son has refractory partial epilepsy. Meaning he has seizures that start in just one part of hte brain and then can generalize from there to the whole brain. Refractory means he has not found seizure control with medication. He went through 3 years not being treated in the middle of this (diagnosed almost 7 years ago) after a misdiagnosis, he is now back on medication at last. We are trying to regain some control. He has 2 seizures a week right now.
HIs sister had seizures for a little over a year. Hers seemed to be similar to Juvenile Myoclonic Epilepsy, something you do not usually outgrow. She was treated for one year and stopped having seizures. She is currently off medication and has not started having them again.

They had a great uncle who had severe epilepsy, but we are told it was not genetic. So little was known when he was alive, though, he died over 50 years ago!

In a nut shell that is their story! I just know about BRE because I research epilepsy and find accurate information for people. I am also a HOPE mentor for Epilepsy foundation and teach presentations on seizure recognition and first aid.

Oh my goodness. I see how through your experience you would have a wealth of knowledge on the subject. I certainly hope you're able to maintain a better control of your sons situaton. I know how painful it is to witness seizure. I imagine you never get used to it.
I'm happy to meet you and I hope I can be a source of support for you, as you seem to be for the folks here. I appreciate your dedication to the cause.

On a positive note, I looked up "famous people with epilepsy" Wow, what an impressive list of the most brilliant and artistic historians. There's an obvious link to Epilepsy and genius.

Yes, we like looking at those lists as well! There is no limit to what kids can work for and achieve! Sam has met Tony Coelho a couple of times. He is an inspiration as well. Co writer of the ADA and former congressman who has had epilepsy since he was a teen.

I am sure you will be a great support as well. It is painful to witness seizures and no, I have not gotten used to it or dealing with the post ictal times....

What does not kill us, makes us stronger!