Benign Rolandic Epilepsy

[1wiggie]

I am looking to connect with other parents whose children have (or have HAD) BRE. My son Jack is 9 and was diagnosed in August of 2008. I'm just wondering about the progression for other kids. Jack's seems not quite text book and I'm wondering if it's really BRE. He has cluster seizures every 4-5 months. Sometimes they are harder to control when he has a break through. He also has daytime partial seizures in his face and did have one grand mal at night. (which is when we decided to medicate) I want to make sure we are doing everything we can for him. I'm also wondering if other kids with BRE are experiencing behavior issues and am interested to hear from anyone who is not medicating and how that has gone for them. Any thoughts/sharing are appreciated!

Jennifer

[momofthree]

Hi Jennifer, I responded to you privately regarding your message to me. I also had a question, is your son's epilepsy a childhood epilepsy, I am so new to all of this? We are hoping my son will outgrow this in time!

[Nakamova]

Hi Jennifer, welcome!

[1wiggie]

I replied to your personal message but also wanted to answer you again. Yes, Jack's epilepsy is a childhood epilepsy and he is supposed to outgrow it by puberty. I can't remember the specific number but it was very high (I want to say over 80%) of childhood epilepsies are outgrown. With Jack's specific type it was about 98%. The question is always whether or not he's properly diagnosed but either way the odds of outgrowing a childhood epilepsy are very high!

[momofthree]

Jennifer, I responded to you privately again, but not sure if I did it right, let me know if you got my message, hope all is well.

[askcarrienow]

Hi Jennifer: I just found this site and joined today. My son has BRE as well and was diagnosed two years ago in kindergarten when he started having seizures all of a sudden in the car on the way to school every day. It was so frightening it still makes me want to cry when I think about it... Anyway, I have him on epileptologist-Still, an herbal medication, which has completely controlled the seizures, but his behavior is not exactly stellar. He also has Asperger's syndrome, so it's hard to tell what's AS and what's BRE when he acts up. I would give an internal organ in order to see him completely healed, but since no one's lining up at my door, just have to find the $$$ for neurofeedback therapy!

Carrie L.

[askcarrienow]

Okay, not sure why that says, "epileptologist-Still" instead of "epileptologist-Still," but, hmm. Tried to edit it, but it looks fine in the post when I click "Edit". Weird. Anyway, it's by Native Remedies. Great product. No, no financial connection between them and me, :-)

[askcarrienow]

Aaaarghhh! It's mangling what I've typed...twice! The product, lest anyone think I am filling my posts with careless typos or I'm just a moron is E P I (dash) Still.

[Nakamova]

It's because there are certain shorthand abbreviations that CWE spells out automatically -- so "e p i" becomes epileptologist whether you want it to or not...

Another one is "S P" which will turn into simple partials, even if you mean "Spelling"

(I've put in spaces so that the autofill won't kick in).

[1wiggie]

I understood what you were trying to get across to me! Thanks for replying to my post. Jack also had his first seizure in the car. We happened to be out in the middle of nowhere so I was driving like a mad woman and still trying to keep an eye on him in the backseat. Not a fun car ride! I have not heard of the herbal remedy you have your son on. We initially decided not to medicate but after a grand mal in his sleep we changed direction. Jack, too , doesn't have stellar behavior but at least in your case you know you're not giving him an unnatural drug. If you're going to have behavior issues either way with a med. I'd rather have it be from something homeopathic. I'll have to check into the epileptologist-still. Thanks very much for giving me some more insight into BRE and what you're experience has been.

Jen

[epileric]

People here have found it to only have a placebo effect

Hi Bernard,

To be honest, once I found the 'placebo' effect had disappeared, the seizure's just carried on as norm, so I quit the stuff.

Epi-Still

[askcarrienow]

Hmm, I find interesting that some would find a placebo effect with this. In my son's case, that is not possible, because, at 7 years old, he had no idea I was giving it to him, he has had no idea when I've taken him off for a day to see what will happen (always a seizure, within 24 hours of the last dose, so I know it really is truly working to control activity in his case), and he doesn't believe or disbelieve in whether it will work. I wonder if it's not strong enough for some conditions, if people are underdosing themselves, combining with pharma, etc... When I read that one of the side effects of the seizure medication our ped neurologist proposed was "may cause seizures," I was like, "Whaaat?!? This is supposed to be a medication to CONTROL seizures, but it may CAUSE seizures?!? You've got to be kidding me!!!" My heart goes out to all who come to the end of the line and have to medicate with pharma, because being on pharma always means some sort of side effect, even if it's not overt. Plus, as far as personal experience, I have a brother who was on (if I remember correctly) Tegretol and Dilantin for a seizure disorder (I am convinced it came as a consequence of being in the Navy in the Gulf War) that they told him unequivocally was not epilepsy (and he had no history of head injuries). Nothing ever worked for him, and he eventually died of cerebral hemorrhage after he hit his head on a table during a late night seizure. I am so very grateful for finding something I felt I could trust (first do no harm) and beyond grateful that it has worked so well for my son.

I'm also interested in what I've read that links epilepsy to parasites... Can anyone weigh in on anything about this? I will post that question in one of the other forums, but just thought I'd throw it out here and see if anyone has done any research about this.

Carrie

[epileric]

Hmm, I find interesting that some would find a placebo effect with this.

Remember that a placebo effect can include the observers seeing what they want to see when observing others taking the medicine, especially when hopes are high.

Also, the child doesn't have to know he's taking it. Just a remark like "you'll feel better after this" can have a placebo effect.