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 son, Keppra and CBD oil ?

Fri, 02/21/2020 - 16:53
Hello, This is my first time on the forums and looking for some advice. My son is 8 years old and has had mild seizures in the early morning while sleeping. They are not so often, maybe every 2 months. He has heavy breathing and sometimes shaking of the arms. He has also had an EEG and it wasn't great. Anyway, he has been on Keppra medicine and we are not convinced it is doing anything for controlling the attacks because they are more or less the same as they were before taking Keppra. Our neurologist suggested taking a higher dose, so we did it, but they still are the same. So, we are considering slowly using CBD (10%) oil and wean him slowly off Keppra. I was wondering what your thoughts are on this? Our doctor is against CBD and says it won't work. I am not convinced about his negative attitude and response. Any ideas would be great. Thank you


Hi, Thank you for posting and

Submitted by Anonymous on Mon, 2020-02-24 - 09:24
Hi, Thank you for posting and we understand your concerns. Treatment and how they body may react to certain medications varies for each individual. To learn more about CBD oil, please visit: .Prior to making any changes to your son’s individual treatment plan, it’s important that you all are following-up with your son’s healthcare team to continue to express your concerns and frustrations regarding his medication and seizure control. It’s also important to address any changes in seizure types, frequency, side effects, symptoms, moods and behaviors to determine what individual treatment plan is best for him. You all may want to consider keeping a journal or diary. My Seizure Diary: ,is a great tool for tracking & identifying seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and therapies, that may affect seizures and wellness, which can be shared with his doctors. It can be challenging to find a healthcare team that you're comfortable working with. If you feel you cannot talk openly with his doctors or that you aren’t working towards the same goals, it may be time to get a second opinion. you have not already, you all may want to consider having your son see an epileptologist, (epilepsy specialist), for assistance find an epileptologist near you, please visit:’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re and making your health and overall well-being a priority. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting:  Additionally, you may always 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, or [email protected].    

You hold your baby close like

Submitted by Plan-To-Succeed on Tue, 2020-03-17 - 22:03
You hold your baby close like my mom did to me and even if the seizures stay the same or don't change threw his life if he loses you every spot in the body that a beat and puals will only have the feeling of moms heart from the hugs because mom held the baby enough and I feel saved from her because of this even crying with me at times of most feared so you may give best outlook threw love.

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