Neurontin - Epilepsy Message Board

ceezmom · 06-15-2004, 06:20 PM

My 12 year old has Benign Rolandic Epilepsy. She has had 6 seizures in two years (3 in one day). As a result, our doctor has prescribed Neurontin (300 mg 3Xday). Can anyone shed some light on the side effects or their experience on this drug? I have researched it on the web. It seems that the FDA approval is for Adjunct-therapy (in conjunction with another anti-convulsant) rather than a stand alone monotherapy drug. I have been very opposed to medication, but since she has atypical seizures for BRE (her seizures come during waking hours) the doctor is pressing me pretty hard to medicate her. Any feedback would be very welcome. Thanks.

tkdmom96 · 06-19-2004, 03:22 PM

Hi and Welcome!

Our daughter was on Neurontin as monotherapy for almost 2 years and she was ages 12-14 at the time. She has/had (we hope) Complex Partial & Simple Partial seizures since the age of 9 months. I wrote "we hope" because she just had a Left Temporal Lobectom (6/7/04) to hopefully irradicate the seizures. So far, so good!

She did well on the Neurontin for a short time. We had to increase it to the max and it just stopped working, Keppra was then added. She did the Neurontin and Keppra for 2 years together. When we started with a new neurologist (Epileptologist) she removed Katie from the Neurontin and she did Keppra monotherapy for 5 months until Lamictal was added. Katie's seizures have been difficult to control over the years, and to date she has been on 7 different meds and combos of those meds.

She had no side affects on the Neurontin at all. And she was up to a large quantity/doseage twice per day. I don't know off hand what the amount was without checking her history notebook.

Good luck to you and your daughter, keep a close eye on her as you head into puberty, that is when Katie really started to have meds problems. Hormones and her menstrual cycle created a lot of seizure activity. That was the case for her, it may not be for your daughter, just keep an extra eye open.

Vicki

ceezmom · 06-20-2004, 08:43 AM

Thanks so much for the information. My daughter Ceeanna (Cee for short) had her first seizure two years ago, she is now twelve. We haven't had any medication to date as her seizures usually occurred early in the AM right after she woke up (she only had 3 seizures in two years). She recently visited her father in Colorado (I live in OH) and had 3 seizures in 24 hours at all different times of the day. Dr. performed another EEG and same diagnosis, Benign Rolandic but since the seizures occurred outside the "normal" time frame (not upon wakening) he wants to put her on medication. Your reply made me feel better about the Neurontin. She's such a good athlete and student, I was scared it might interfere, but also want to be sure she's safe from having a seizure when I'm not there to take care of her. Thanks for the support.

Cindy - Cee's mom