2 daughters with Benign Rolandic Epilepsy

[spsparks]

Hello~
My name is Stacey.
I would like to talk to parents or siblings who are going through this.
My girls, Molly who is 8 and Hannah who is 10, were diagnosed 5 years ago, 6 months apart. Molly is taking Trileptol and Hannah is still on Kepra. Molly is also ADHD.
Its been such a long and curvey road and so much has happend that it would probably be easier for me to answer you if you ask me questions.
I would also like to stress that this is my first time in a forum and i really want to talk to people, so please feel free to contact me.
Thank you~ and i'm so glad you are here!

[Loopy Lou]

Hello and welcome! Whilst i can't help you with specific information, i'm certain that there will be many here who can.

I was really glad this site was here too, and found it so helpful, informative and friendly. Good luck!

[RobinN]

Hi spsparks - WELCOME to CWE

You have your challenges I see. I have only dealt with my daughters seizures for the past three years. So I believe you are one of the parental experts here. Especially on BRE.

What are the symptoms of this type of seizure. My daughters have been mostly tonic clonics. Though when she was on medication, she displayed other types. She remains med-free for a full year now, and is far more controlled due to nutritional changes and neurofeedback.

I am glad you are here also. I hope you find this a place of comfort and support.

[Meetz1064]

spsparks! And welcome to CWE! I think that you will find that there are a growing number of parents here at CWE, and the information that you can gain from them will be invaluable. That said, one of the many nooks and crannies you might want to check out would be the Nursery.

Have you considered any dietary changes? Or are your girls well-controlled on their respective meds? I'm sure it's not an easy thing having two children that are E patients.

There is at least one other mother that I can think of right off the bat on the forum here that has 2 children that are E patients---joan. However, I believe their diagnosis is Juvenile Myoclonic Epilepsy, but I may be wrong on that.

Feel free to kick up your heels, and check out the various nooks and crannies. The Kitchen and Library are chock full of information, the Padded Room is great for venting when you need it, and the Nursery, as I mentioned before is terrific for parents to get together in.

Mr B, our host, has built us an AWESOME home here, so feel free to stick around. We'll be here, I promise.

Take care.

Meetz

[spsparks]

I appreciate everyone responding to me so fast!
A little more about my girls~

Molly's last Neurologist apt. detected spikes moving to the other side of her brain. What that means exactily, i still don't know. And, her Physician says she is ADHD (by being tested through their specialist), but her Neurologist says that BRE may look like ADD or ADHD at times. She is not on meds for ADHD,and both girls are struggling through school, but i believe it is from the absence seizures.
Their seizures vary. Molly will have them awake and asleep, and give warning by vomiting, or wetting the bed. Hannah will only have one during sleep,and so far, no clonic tonic.
I could go on forever talking about my girls! If you have any questions, just ask me. And Thank you again~ i feel comfortable here!

[Bernard]

Hi spsparks, welcome to the forum.

Molly's last Neurologist apt. detected spikes moving to the other side of her brain. What that means exactily, i still don't know. ...

They were able to pinpoint abnormal (excessive) brain wave activity to specific areas of the brain. This can help in diagnosing the type of epilepsy.

... And, her Physician says she is ADHD (by being tested through their specialist), but her Neurologist says that BRE may look like ADD or ADHD at times. She is not on meds for ADHD,and both girls are struggling through school, but i believe it is from the absence seizures.

I would highly recommend you investigate EEG neurofeedback. Many insurance carriers will cover it for ADD/ADHD treatment and it can be effective for seizure control as well. It completely eliminated my wife's multiple, daily absence seizures over a decade ago.

FYI - First Gene Discovered For Most Common Form Of Epilepsy

[RobinN]

Also, a study was done, which shows an increase in abnormal EEGs when children with gluten intolerance / sensitivity ingest it.

Abnormal Brain Waves from Ingestion of Gluten
ADHD Caused by Digestive Disorder
ADD-ADHD as related to epilepsy

[spsparks]

Thanks so much for the links! Thats what i need to do~ be more aware so i can educate my girls~

[joan]

Brushes dust off.. Im still hangin in there and I hope everyone well.

Welcome Spsparks. You have fell into a great group. They are so smart, resourceful and kind* You will find alot of good thoughts and good information here. Welcome*

I am sorry to hear of your daughters. But get mad, get angry, then get over it and help figure this out. Both my kids juvenile myoclonic epilepsy... not the best thing, certainly not the worst. Id suggest you look into the The Epilepsy Phenome Genome Project (EPGP) They are trying to figure this all out so we can have kids born without E in the future. We have no none E in our families.

http://www.epgp.org/

If I can be of any help? please just let me know. I will try to log on daily again.

I hope everyone well
joan*

[joan]

I just looked into Benign Rolandic Epilepsy. ITS GREAT NEWS!! They say 95% outgrow it before 14. That is wonderful news.
I wish you well
joan*

[Kayleesmom]

Hi Stacey,
My three year old has tonic clonics and has since she was five months old. Her dad had seizures too. She is on trileptal and keppra also. She also takes phenobarb.
Just wanted to welcome you to the group and let you know that we are all here for you and understand.
Hugs and prayers to you and your girls.
Leslie G.

[spsparks]

Hello Leslie and Joan~
Thank you for the link. I just popped in for a min, but will look into it more in depth as soon as i can. Also thank you for the words of encouragement. Yes~ i am mad enough to get busy! haha! I want to know all i can. Like i said, i have a feeling that this will be around awhile.

[RobinN]

Here is a NEED. We need to patent a new undergarment that will fit the needs of those that suffer this embarassing occurance during a seizure.

[lesley1110]

Stacey,
I have just found this website and am amazed at the number of parents who are facing the same difficulties. My daughter has recently been diagnosed with rolandic epilepsy,she is also going through early puberty. She has been given carbamazapine as her seizures last 8 minutes and were quite severe.
She is having great difficulty dealing with whats happening to her and is scared to go to sleep. I cannot sleep at all and turn into a complete manic nutter near her bedtime. This is also having an effect on the rest of the family. Her Dad and I are divorced and I live with my son and partner. They all seem much cooler than me and much more able to cope. I cant begin to imagine how you cope with both of your children having this condition. How do you cope?