Hi- My son had his first seizure last Monday. It was a LONG 15+ min daytime focal motor seizure that stopped after he was given Versed. After spending nearly 12 hrs at the pediatric ER (blood work, CT scan, & EEG) he was diagnosed with BRE. From everything I've read about BRE they are usually short and nighttime episodes. Thinking back he may have had short nighttime seizures in the past that we thought were just part of his restless sleeping. We have no known family history of epilepsy but several cousins and an uncle are breath holders (to the point of passing out). I'm not sure if that's related or not? He is currently on Trileptal and isn't scheduled to see the neurologist for 2 weeks (dr's choice not mine!). I hate that my son is on meds (I'm a medicine as a last resort kind of a person) and am hoping that we can find a more natural, holistic way of managing BRE. I'm also wondering if he was put on the meds bc they were necessary (due to the long daytime seizure) or if it was more of an ER CYA. Anyways, I'm so glad I came across this forum, I'm looking forward to learning and hopefully eventually contributing, and welcome any feedback/insight anyone may have. Thanks!
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chmmr
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Hi Ecolimom,
Sorry to hear about your son's seizure. Meds are a tricky one for sure with all the side effects and you have to carefully balance the pros and cons for your own child to decide if meds are right or not.
Did the ER tell you what the EEG showed? I'm not sure how old your child is, but i would guess that the length of the seizure being 15 + minutes was a large factor in them putting him on medication. People with diagnosed epilepsy are usually told that anything over 5 minutes requires emergency treatment asap to prevent damage to the brain from status epilepticus (which basically is a fancy word for continuous nonstop epileptic activity in the brain). I also know from what i have read that BRE generally is self limiting, and is nocturnal as you mentioned, so it's definitely interesting that they gave you that diagnosis (Did a neurologist see you in the ER? Or was it the ER docs that gave you that info?)
Welcome to CWE! I know you will find lots of helpful people, and hopefully lots of great information to help you and your son.
Sorry to hear about your son's seizure. Meds are a tricky one for sure with all the side effects and you have to carefully balance the pros and cons for your own child to decide if meds are right or not.
Did the ER tell you what the EEG showed? I'm not sure how old your child is, but i would guess that the length of the seizure being 15 + minutes was a large factor in them putting him on medication. People with diagnosed epilepsy are usually told that anything over 5 minutes requires emergency treatment asap to prevent damage to the brain from status epilepticus (which basically is a fancy word for continuous nonstop epileptic activity in the brain). I also know from what i have read that BRE generally is self limiting, and is nocturnal as you mentioned, so it's definitely interesting that they gave you that diagnosis (Did a neurologist see you in the ER? Or was it the ER docs that gave you that info?)
Welcome to CWE! I know you will find lots of helpful people, and hopefully lots of great information to help you and your son.
N Sperlo
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Hello Ecolimom,
Epilepsy is a confusing thing especially when it happens a night. My whole life I was a "restless sleeper" and only recently I found out that is not the case TEN YEARS after I was diagnosed with epilepsy.
Being on medicine can really suck, but in my case, the side effects are what I suffer in order to live a completely normal life. I love my life just the way it is and am proof that your son can live a normal life and have a lifestyle he can love.
My wife and I both prefer to do things in a holistic way, but when it comes to epilepsy I prefer to use Western Medicine. If you plan to experiment with herbal remedies, do so before he starts driving.
Welcome
Epilepsy is a confusing thing especially when it happens a night. My whole life I was a "restless sleeper" and only recently I found out that is not the case TEN YEARS after I was diagnosed with epilepsy.
Being on medicine can really suck, but in my case, the side effects are what I suffer in order to live a completely normal life. I love my life just the way it is and am proof that your son can live a normal life and have a lifestyle he can love.
My wife and I both prefer to do things in a holistic way, but when it comes to epilepsy I prefer to use Western Medicine. If you plan to experiment with herbal remedies, do so before he starts driving.
Welcome
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Hi Ecolimom, welcome to CWE!
As chmmr mentioned, kids tend to outgrow BRE, and in the mildest cases, there is no treatment at all. However, the age of onset and the frequency/duration of the symptoms can sometimes make medication a good idea, with Tegretol being the first choice. the good thing is that BRE symptoms usually respond quickly and meds are almost always discontinued after two to four seizure-free years.
I'm all for avoiding meds if at all possible, but in this case they might be worth a try. If you're uncomfortable with the idea and/or the medication is problematic for your son, make sure to let the neuro know so you can get a sense of your options.
Best,
Nakamova
As chmmr mentioned, kids tend to outgrow BRE, and in the mildest cases, there is no treatment at all. However, the age of onset and the frequency/duration of the symptoms can sometimes make medication a good idea, with Tegretol being the first choice. the good thing is that BRE symptoms usually respond quickly and meds are almost always discontinued after two to four seizure-free years.
I'm all for avoiding meds if at all possible, but in this case they might be worth a try. If you're uncomfortable with the idea and/or the medication is problematic for your son, make sure to let the neuro know so you can get a sense of your options.
Best,
Nakamova
Thank you everyone for the responses! My son is 4.5. We were given the BRE diagnosis by the ER doctor after his EEG was read by a pediatric neurologist. So i *think* we have a true diagnosis but I'm not 100% sure of that. We haven't actually met or spoken directly with the neurologist yet but have an appointment for Friday. I have spent quite a bit of time reading through the forums and have so many questions for our Dr. But since you guys have been down this road before is there anything that you did ask or wished you had asked when you were in my shoes? It was difficult to get an appointment and I don't want to forget anything!
Thanks for the advice and for the welcome!
Thanks for the advice and for the welcome!
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When you do get your questions that you want to ask him write them all down and check them off as you go along to make sure you don't miss any. It's a good idea to write down the answers that he gives you to make sure you remember what he said. I do this on my visits.
Keep a journal of when the seizures happened, how long they lasted and what your son did during them. This will help the neuro out a good bit too.
I cant' think of any questions off hand but I'm sure others will be able to help you on that one.
Keep a journal of when the seizures happened, how long they lasted and what your son did during them. This will help the neuro out a good bit too.
I cant' think of any questions off hand but I'm sure others will be able to help you on that one.
giveasmile
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I just wanted to say hello and welcome. I can't think of any specific questions you should ask but go along with writing them down and checking them off. I haven't been doing that I regret it. It can feel like a long time between appointments when the diagnosis is new or a medication is new.
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I'm not sure how old your son is but a parent may have an easier time asking the question to their child so they understand it than the dr does. Some children get scared when they are in the drs office to so he may not want to say much. The neuro may ask you some questions like these:
Do you have any feelings before, during and after the seizure (if your son remembers them). Dizzy, blurry vision, smells, numbness.
During the seizure does he know what's going on but can't react to any of it? He may understand what you are saying to him but what he answers with is just gibberish. or does he completely blank out and not now the seizure went on? A way to tell when someone is usually completely out of a seizure is when they are able to answer simple questions with out having to think about it. Let the neuro know how long it takes before this happens. Examples of questions are what is his name, your name, pets name, where you live and things like that. I'm not sure how old your son is so you might need to make the questions simpler like showing him an object and asking him what it is.
After the seizure does he have a headache or become tired? Is he tired the next day too?
Be ready for questions like this and the easier you can answer them the smoother things can go along.
Do you have any feelings before, during and after the seizure (if your son remembers them). Dizzy, blurry vision, smells, numbness.
During the seizure does he know what's going on but can't react to any of it? He may understand what you are saying to him but what he answers with is just gibberish. or does he completely blank out and not now the seizure went on? A way to tell when someone is usually completely out of a seizure is when they are able to answer simple questions with out having to think about it. Let the neuro know how long it takes before this happens. Examples of questions are what is his name, your name, pets name, where you live and things like that. I'm not sure how old your son is so you might need to make the questions simpler like showing him an object and asking him what it is.
After the seizure does he have a headache or become tired? Is he tired the next day too?
Be ready for questions like this and the easier you can answer them the smoother things can go along.
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