Community Forum Archive

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.

Nothing seems to work for us

Thu, 03/14/2019 - 01:51
My daughter is 6 now and has been having tonic clonic seisures since 6 months was orginally diagnosed as infantile spasms but have long movedn on from that. We have tried 18 different medications including the keto diet, cbd oil, all forms of steriods, nothing works for more than 3 months. We are about to give it all up. She has over 50 seisures a day. Had anyone else had this type of thing and then finally found the answer. Is there hope that we will find something that will work. She has the developement of a 1 year old. Needing encouragement. Thanks

Comments

Wow, that's a lot to deal

Submitted by Amy Jo on Thu, 2019-03-14 - 12:30
Wow, that's a lot to deal with! What's the current understanding of her epilepsy (there should be a syndrome or genetic testing showing something because that's sounds like a particularly debilitating form of epilepsy)? Other than switching to better specialists/epilepsy centers, the best guidance is from someone dealing with the same epilepsy - have you looked at the Rare Epilepsy Network? https://ren.rti.org/

she is young as i was when

Submitted by dickey890 on Thu, 2019-03-14 - 22:31
she is young as i was when mine started. Over 40 years later i discovered magnesium - tablets or oil. i would get the spray bottle of magnesium and rub it on her stomach and back of the neck. read about magnesium and the symptoms it helps. start here http://mgwater.com/rodtitle.shtml#contents

The ketogenic diet can help.

Submitted by Athena_5ce4563aba984 on Wed, 2019-05-22 - 12:32
The ketogenic diet can help. It isn't necessarily easy to manage, and should be done with the help of nutritionists, but it could be worth investigating. I've heard that not all neurologists know about it or want to suggest it. I've had no experience of it myself. It's a bit like the Atkins diet.

Sign Up for Emails

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