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BRE

Wed, 07/30/2008 - 01:33
Topic: Living With Epilepsy - Youth
My 9-year-old son was diagnosed with BRE last week. He started having twitches in his face 4 months ago and only happend while he was just waking up but still groggy and tired. Last week he had a full grand mal seizure that started with the twitching in his face but spread full body. We had an EEG done on him and were told it came back abnormal and that he had BRE. We are not able to see a pediatrician neurologist until 2 months from now. Anyhow, I am told that these usually occur during sleep or upon awakening. I have not had a good nights sleep since last week. I just lay awake all night and watch him. I sleep on and off all night and at every twitch I am scared. How does anyone else cope with this and do they get much sleep or any suggestions as to what anyone else does for peace of mind during the night???  rayray's mom

Comments

Re: BRE

Submitted by rayraysmom on Sun, 2008-08-03 - 18:55
Thanks for the info. Some, I already knew, but you helped out alot. His EEG came back abnormal which they tell me just means that he has epilepsy. The neuro diagnosted him over the phone with my son's pediatricain and we cant see the neuro until another month from now. I was nervous about that at first,but after these responses and reading up on BRE I dont feel too bad now. Good luck with your son and all the testing. God Bless.

Re: BRE

Submitted by Debi on Mon, 2008-08-18 - 15:51
My daughter was diagnosed with bre one year ago.  She had what I thought was one seizure but later learned it was a partial that generalized into a grand mal.  I too didn't sleep for months after the emergency visit and testing and diagnosis.  It was a year and a month until the next activity showed up.  Bre can be like that....lots of seizure activity or very sparadic.  Yesterday my daughter had three simple partial seizures.  Now we are back to the sleepless nights for me, and for her, fear of going to sleep.  I feel for all of you and want you to know that every night since the first seizure my daughter and I pray  for her and all of the children that have epilepsy. p.s. She is back to sleeping with me and my husband again.

Re: BRE

Submitted by suari on Fri, 2008-08-15 - 21:16

Hi,

This is my first time posting. I found all your comments very helpful. My daughter, who is almost 8, was diagnosed with BRE two years ago. We have managed her seizures pretty well with osteopathic treatments and amino acid supplements. But, just recently, her seizure activity has increased. Twice this week, she had two seizures while falling asleep. This was scary enough, then she had a grand mal too. We saw our neurologist today and she's fine letting us ride it out but I think I'm at the end of my coping ability. It's just so hard to watch her go through this. She's recommended Keppra if we decide to take the medication route, which we are seriously considering. Are there others out there that have made this decision and have had success? We also found that stress, tiredness and overstimulation bring on the seizures. She's in bed every night at 7:00 and even slipping to 8:00 will bring one on.

Thanks so much.

Hi,

This is my first time posting. I found all your comments very helpful. My daughter, who is almost 8, was diagnosed with BRE two years ago. We have managed her seizures pretty well with osteopathic treatments and amino acid supplements. But, just recently, her seizure activity has increased. Twice this week, she had two seizures while falling asleep. This was scary enough, then she had a grand mal too. We saw our neurologist today and she's fine letting us ride it out but I think I'm at the end of my coping ability. It's just so hard to watch her go through this. She's recommended Keppra if we decide to take the medication route, which we are seriously considering. Are there others out there that have made this decision and have had success? We also found that stress, tiredness and overstimulation bring on the seizures. She's in bed every night at 7:00 and even slipping to 8:00 will bring one on.

Thanks so much.

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