New here -- questions about nocturnal seizures..and no meds

[maddiesmom]

Hi everyone,

I'll try to keep this short. My daughter is 6, and has a complicated history. She developed infantile spasms as an infant which resolved after a brain benign brain tumor was removed. Fast forward....about three years ago we started noticing the occasional nighttime seizure. We noticed them when we were traveling and wrote it off as travel stress, fatigue and change of routine. (Our neurologist told us she was at risk for seizures simply from having scar tissue from surgery). Well, now we realize, they weren't just happening when we travel. They happen all the time. About once a night. We have avoided medication because she is progressing so well in school and I have read so many stories about kids being put on one, then two, then three meds and not having control. And then I've read about some parents dropping meds because the side effects were too great. Right now, the scenario of multiple meds, no control and side effects is really scary to me, when right now it doesn't seem like we are dealing with terrible side effects from the nocturnal seizures themselves. We do take b6 and do cranial sacral and we are gluten free. We do all these things to reduce the risk of seizures. I also read on here that vita e has been shown to dramatically reduce the risk. But is there anyone on here that has chosen to go exclusively alternative or natural. And is there anyone on here that suffers exclusively from nocturnal seizures?

Thanks

 

[epileric]

Welcome amandaorr

Sorry to hear about your daughter. I've had seizures all my life but I've always been medication & think you're doing the best thing trying everything else first.

RobinN has had success with her daughter, she'll probably have something to contribute. Meanwhile you might want to look at this list of alternatives & see if theres anything you haven't heard of yet-you do seem pretty well informed but I hope it helps.

 

[Nakamova]

Hi amandaorr, welcome!

We are all eager for a non-med treatment for epilepsy. I hope you share more of your research. As Eric mentions above, RobinN has found success through nutritional approaches and neurofeedback. You can read about it here:

http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

 

[Endless]

Amanda,

Welcome to CWE!

I'm so sorry to hear about your baby's seizures. There are lots of parents in here, so they'll have lots of good advice.

This is probably not the answer for everybody, but my cousin's child had febrile seizures a few weeks after she was born. They were about to put her on meds. As a last ditch effort they tried vitamin B, and that did the trick. She's been seizure free ever since.

 

[kari2]

hi~! so im a bit older than your daughter but i do only get nocturnal seizures. my first happened when i was 14 and and the latest happened about 4 days ago. and ive only had about 4 or 5 all together. but all of them have been at night. i didnt start taking mecine until i was 20. i didnt start taking meds til i was about 20.. but personally im going to give taking vitamin B a go.

 

[RobinN]

Hi Amanda
We tried the meds and I was not pleased with the results to say the least. Rebecca's quality of life, declined rapidly.

So we commited to neurofeedback and making nutritional changes.
My daughters seizures seem to be due to reactive hypoglycemia, and damage done to her GI system while eating the Standard American Diet -SAD. It affected her hormones, and this lowered her seizure threshold.

Since I focused on raising her seizure threshold, she has improved. She is now 6 mo. seizure free and med free for 2+ yrs. My daughter also has a birthmark on her right frontal lobe, which might be why she is more inclined to get seizures. Yet one epilepsy dept in a teaching hospital said NO, another said YES.... So I was on my own to use my intuition and keep a daily journal. I used my research to guide me in the medical decisions I have made for my daughter. I am a believer in seizure thresholds.

She might be more sensitive when she decides to have children, but we take one day at a time.