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my child has epilepsy

Thu, 02/12/2009 - 11:19
My 6 year old son has just been diagnosed with bre, he had an eeg that showed abnormal results, the neurologist told me yesterday that its bre! I am devastated! I cant wrap my brain around this. We are scheduled for a 48 hour video eeg next week, can anyone inform me of what to expect when we are admitted to the hospital for this test? How will we be able to entertain a six year old confined to one room for 48 hours? I have never seen my son have a seizure, he wakes up many times throughout the night, and has a lot of issues getting back to sleep and this has been ever since he was an infant. Somebody please help me grasp this? I am so tired of hearing its okay its not a big deal, it'll be alright. This is my 6 year old having to deal with horrible things, this is a big deal! I have searched the internet and read a bunch of articles but they aren't helping me feel any better. Any suggestions? 

Comments

Re: my child has epilepsy

Submitted by wyboemail on Thu, 2009-02-12 - 14:06

Kim, first of all calm down. I know exactly what you are going through. I cried for days after my son had his first seizure. Not knowing what was going on was horrible. He had the MRI and CT scan right a way but results were not back until a few weeks later and we could not get in for an EEG for a few weeks after that. Please email me and we can talk. We have been through the VEEG and can let you know what to expect. My son was dx in March of 2007 so we have 2 years of trial and error.

curtis.wybourn@qbeamericas.com

Curt

Kim, first of all calm down. I know exactly what you are going through. I cried for days after my son had his first seizure. Not knowing what was going on was horrible. He had the MRI and CT scan right a way but results were not back until a few weeks later and we could not get in for an EEG for a few weeks after that. Please email me and we can talk. We have been through the VEEG and can let you know what to expect. My son was dx in March of 2007 so we have 2 years of trial and error.

curtis.wybourn@qbeamericas.com

Curt

Re: my child has epilepsy

Submitted by skillefer on Thu, 2009-02-12 - 14:50

Hi Kim!  I'm a school teacher and have grand mal seizures.  First of all, you need to calm down.  How your son sees you react will effect how he reacts to this condition.  If your constantly panicky, stressed, and worried, your going to make him scared.  Ok?  Not to be mean, but he's taking his cues from you.  Ok...now as for BRE...

BRE is actually one of the best diagnoses to get for epilepsy.  Wh?  Because a LOT of kids outgrow it.  Ok?  So take a deep breath.  This may not be a permanent condition for your son.  He may outgrow it by the time he goes through puberty.

As for the 24 hr. EEG...try taking along some coloring books, construction paper, books to read, board games like checkers...stuff like that.   Call the docs office to find out exactly what can and can't be taken to thehospital.

To help you, I would suggest that you begin taking control over what you can.  some kids with BRE respond very well with dietary changes.  So I'd start looking into the Ketogenic diet. You'll want to start researching the different ways of treating BRE. Some people use meds, while other go for alternative therapies like vitamin therapy, diet therapy, and EEG neurofeedback. 

Personally, I started having seizures when I was 3, and then they disppeared until I turned 13 and started going through puberty.  Since then, I've been on meds.  But I am not my epilepsy.  For me, epilepsy is a medical condition, no worse then diabetes or asthma.  It's a condition to be dealt with.  So take the bull by the horns and start doing the research.  THen, make whatever changes to your lifestyle that you need to.  Just because your child has been diagnosed does not mean it's the end of the world, or his dreams.   Ok?  I have a bachelors degree, masters degree, great career teaching..(and yes, I've had seizures in front of the class) , an honorary degree, a fantastic husband, a baby on the way, and a drivers license.  There's a few things I don't do, like bathe alone or ride roller coasters...but other then that, I can pretty much do what I want.  So it's not the end of the world. 

As for the EEG and the fact that you have never witnessed a seizure, you better remember to stay calm.  You may end up scaring him silly if you panic or if he comes out of one and sees terror in your eyes.  I'm not trying to be harsh.  It's just....for me, the way my mom reacted had a traumatic effect on how I thought about myself and my seizures.  To this day, I feel guilty whenever I have a seizure.  I know, stupid...after all, it's not like I can completely stop them...but yes..I feel guilty. 

Hi Kim!  I'm a school teacher and have grand mal seizures.  First of all, you need to calm down.  How your son sees you react will effect how he reacts to this condition.  If your constantly panicky, stressed, and worried, your going to make him scared.  Ok?  Not to be mean, but he's taking his cues from you.  Ok...now as for BRE...

BRE is actually one of the best diagnoses to get for epilepsy.  Wh?  Because a LOT of kids outgrow it.  Ok?  So take a deep breath.  This may not be a permanent condition for your son.  He may outgrow it by the time he goes through puberty.

As for the 24 hr. EEG...try taking along some coloring books, construction paper, books to read, board games like checkers...stuff like that.   Call the docs office to find out exactly what can and can't be taken to thehospital.

To help you, I would suggest that you begin taking control over what you can.  some kids with BRE respond very well with dietary changes.  So I'd start looking into the Ketogenic diet. You'll want to start researching the different ways of treating BRE. Some people use meds, while other go for alternative therapies like vitamin therapy, diet therapy, and EEG neurofeedback. 

Personally, I started having seizures when I was 3, and then they disppeared until I turned 13 and started going through puberty.  Since then, I've been on meds.  But I am not my epilepsy.  For me, epilepsy is a medical condition, no worse then diabetes or asthma.  It's a condition to be dealt with.  So take the bull by the horns and start doing the research.  THen, make whatever changes to your lifestyle that you need to.  Just because your child has been diagnosed does not mean it's the end of the world, or his dreams.   Ok?  I have a bachelors degree, masters degree, great career teaching..(and yes, I've had seizures in front of the class) , an honorary degree, a fantastic husband, a baby on the way, and a drivers license.  There's a few things I don't do, like bathe alone or ride roller coasters...but other then that, I can pretty much do what I want.  So it's not the end of the world. 

As for the EEG and the fact that you have never witnessed a seizure, you better remember to stay calm.  You may end up scaring him silly if you panic or if he comes out of one and sees terror in your eyes.  I'm not trying to be harsh.  It's just....for me, the way my mom reacted had a traumatic effect on how I thought about myself and my seizures.  To this day, I feel guilty whenever I have a seizure.  I know, stupid...after all, it's not like I can completely stop them...but yes..I feel guilty. 

Re: my child has epilepsy

Submitted by kimcourt on Thu, 2009-02-12 - 15:38
I am always careful to keep it together in front of my son. Because I am very aware that he will take his cues from me. He handles everything with a grain of salt, i wish i could. He just thinks we are doing these tests to find out why he has such trouble sleeping. Its the thoughts and the paranoia when he is sleeping or away at school that gets to me. I have been researching article after article online and i guess its just the thing of taking it one day at a time now and seeing what the 48hour video eeg shows next week.

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