The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Uncontrolled Epilepsy

Tue, 06/13/2006 - 14:23
I have a son that is now 15 years of age. At the age of 9 he started seizuring for no reason. The standard things were done, MRI, CT scan, etc, everything was normal. He had no injury, no high temperature, no recent vaccinations. After two days of seizuring the put him on dialantin. He still seizured for the new few days. I finally was able to get him to a dr at Primary Childrens hospital in Salt Lake City. The Dr there could not find anything wrong either, and changed his medication to tegretol. This made it so he was seizuring appx 1 time every 3 weeks. After appx a year of being on this medication he quit responding to it and started seizuring everyday. Since that time he has been on appx a dozen medications, and was going backwards fast (not responding, in bubble etc). 22 months after the first seizure he was seizuring every day and quit reponding again to the medications and went into continuous grand mal seizure and adventually a coma for 9 days. He started out as a baby at this point, over the course of the next year we were able to have him progress appx 5 year of development. We still tried multiple medications and combination of medications. 13 months later again he quit responding to the medications and went into continuous seizures. This time he was life flighted to Primary Childrens and was in ICU for 6 days and then rehab for 4 days, they changed his medication to Phenobarbital and Keppra. He has been reponsive on this medication but still siezures a couple of time a day. Any ideas,...I have checked into medicinal marijuana...any other ideas?

Comments

Re: Uncontrolled Epilepsy

Submitted by major on Tue, 2010-08-31 - 07:28
My wife has uncontrolled epilepsy since the start of April, not responding to any medication , has the small seizures daily (around 2 a day) the big ones were 2 weeks apart but this gap is now narrowing to days , doctors are still trying to figure it out, MRI of the brain proved normal.. it's hell but we have to continue pushing for answers and solutions...

Re: Uncontrolled Epilepsy

Submitted by angel_lts on Wed, 2006-06-14 - 08:22
Please check my group out. I have other options than just meds. Omega three, b vitamins, good diet, neurofeedback.... There is more options. DOnt give up hope. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Uncontrolled Epilepsy

Submitted by angel_lts on Wed, 2006-06-14 - 08:28
I was on omega three for several years now. Got rid of 234 auras and nine seizures a month. I have info in my group on it. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.