Reflex Epilepsy, new member needs help

[fight4her2006]

Hi I'm a new member and my husband and I have an 8yr old daughter who had had seizures youre she was 5mos old. Started with infantile spasms to myoclonic jerks and twitches to currently tonic seizures caused mainly by outside stimuli (reflex epilepsy). She underwent brain surgery two weeks ago and had a full temporalobectomy to stop or reduce the tonic seizures but unfortunately she continues to have them, at least 4 or 5 a day.

She currently takes Topamax (125mg) and Onfi (20mg) both twice/day. We also give her natural supplements: b6, magnesium, taurine, and dmg. Is anyone else's child have similar epilepsy? She is also experiencing a lot of eye twitching. Any help or advice will help. Thank you!

 

[Endless]

Welcome!

I don't have a child with epilepsy, but many members here do. I'm hoping they'll chime in soon.

 

[kirsten]

fight4her, I see you are new, but you might get more responses if you post under the 'nursery' section, because that's where the parents hang out.

 

[DayDreamer]

What is the stimuli causing the seizures?
Has controlling it or her capability or responding to it helped control the seizures at all?
What have you tried?

 

[Nakamova]

Hi fight4her2006 --

Sorry to hear of all you and your daughter are going through right now. Have you mentioned the eye twitches to her doctor? They may be a side effect of the Topamax (some other members have reported that as a side effect). I hope you and her pediatric neuro can find a way to get the seizures under control, perhaps by trying a different combo of meds.