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.

My baby on Keprra, help I need advice!!

Sun, 12/29/2019 - 16:03
My baby was born having seizures, she was put on many different drugs at the beginning to get them under control, she had been taken off of all of them now apart from keprra, she is having a 0.52ml dose x2 a day, She’s now 6 weeks and I have a few concerns, all she does is sleep or cry, she has a few hours a day of which she is alert and quiet but it’s rare! She hasn’t smiled yet and once she’s in a dep sleep she seems to twitch quite a lot, can anyone share their experiences with me if they had a young baby on keprra too, I’m lost


Hi, Thank you for posting, we

Submitted by Anonymous on Mon, 2019-12-30 - 08:52
Hi, Thank you for posting, we understand this must be very scary and upsetting for you all to experience. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications she takes, please visit:’s important you all are continuing to follow-up with her healthcare team to express your concerns and if she experiences any changes side effects, symptoms, seizure types/ frequency and behaviors, to help determine what individual treatment plan is best for her. You may want to consider keeping a journal or a diary. My Seizure Diary: a great tool for tracking seizures,setting reminders, recording medical history, managing medication & other therapies, recognizing triggers, side effects, behaviors, moods and other health events that may affect wellness, which can be shared with her healthcare team. It’s common for those who are in caregiver role to feel overwhelmed, but it is just as important to make sure you’re taking care of yourself as well.  It can be helpful to connect with other parents who may have similar experiences, to ask questions, find &give support to each other, by visiting:  Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help,hope, support, guidance, and access to national and local resources. 1-800-332-1000, [email protected].

Sign Up for Emails

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