BRE chose not to medicate, is this a wise choice?

Re: BRE chose not to medicate, is this a wise choice?

Submitted by mmmc on Tue, 2010-12-28 - 02:05

I don't have any answers for you, tcourson, but I just had to write because I'm in the same situation.  My 6-year-old daughter was diagnosed with BRE in June '10 after two seizures, one in February that we did not witness much but the tail end of, the other in May that generalized to a tonic-clonic seizure while she was asleep in the car after an exhausting weekend.  We elected not to medicate, as she is already a very stubborn, strong-willed kid who presents her teachers (and us!) with discipline issues, and I am alarmed by what I hear about the side effects of anti-seizure meds.  Until recent articles I've read about SUDEP, our thinking was that her bed is a pretty safe place for seizures to happen, and that given her age, she rarely sleeps away from home so we're still pretty cocooned.  You know, no summer camps and such yet.  She just had her third one a couple weeks ago in bed with me the day before she came down with a nasty bug that gave her a high fever for days.  It lasted a minute and was tonic-clonic again.

The thing that has scared me recently has been news of SUDEP, since her seizures happen during sleep and are tonic-clonic.  I would love to hear input from other parents of kids with BRE who've walked a longer path in our shoes than we have!

Re: BRE chose not to medicate, is this a wise choice?

Submitted by brenda-sw on Sat, 2011-01-01 - 20:13

Only you know if your choice is a wise one...it is your child, your family so whatever decision you make you have to feel good about. 

Our daughter's BRE sounds similar.  She was three when she was diagnosed.  Have first seizure in May '10, second one a month later.  Both lasted a minute or so, although the first one had long 'side effects' that we later learned were considered 'still seizing' so it was actually pretty long.  After three EEG's and two 'second' opinions we did decide to medicate.  Our daughter's 48 hr. EEG's showed frequent (we were told 80%) nighttime spikes and occasional daytime spikes.  With all that spiking our dr though she should be on the lowest dose possible and only at night.  We HATE medicating our kids (we don't even vaccinate) but we did choose to start her on Keppra (200 mg, 1x per day @bedtime).  She started in early July- slowly weaned her on and her latest 48 hr EEG (Nov '10) came back 100% normal....amazing really, since she is not medicated at all during the day.  We see no side effects at all (although we did see some when we were weaning her onto the med's- they only lasted a day or so, until her body adjusted to new dose).

 I still hate giving her the med's and I still sometimes wonder if it is the right thing....but like I said for us, no side effects and a thriving healthy, happy little girl.

just sharing another side and like I said you have to go w/ your gut and if it tells you not to medicate than it is the right thing to do for you and your family.

GOOD LUCK,

Brenda