Community Forum Archive

Hello. I’m so sorry to hear that you are going through this, but I am also not surprised. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. Someone from the Epilepsy Foundation will probably be responding to you during the week with some more guidance and resources, but I wanted to try to get you started based on my experience as a patient and knowledge helping clients who have epilepsy. Here is a link to the information on Keppra. https://www.epilepsy.com/medications/levetiracetam You may notice that 3000mg daily is the recommended dosage for treating epilepsy when it is the only medication that the patient is taking and so that is what the new neurologist is basing his recommendation on, however it is also my understanding as a patient with epilepsy and having been treated by many neurologists, including Epileptologists that it also standard practice to prescribe the lowest dosage necessary for the individual to control their seizures. It is not uncommon to still have an EEG within normal limits or an EEG that is abnormal between seizures whether the seizures are controlled or not and I will make a recommendation further down in my explanation for you and your daughter to consider when advocating for her. Here is a database for the driving laws by state. https://www.epilepsy.com/driving-laws/2008336 As you can see, California does have an appeal process, so you may be able to appeal whatever this doctor tries to do if the state agrees with him if your daughter “doesn’t comply”. I hope that your daughter is compliant with her former doctor’s treatment plan and is taking her medication as prescribed, so that if you choose to do what I recommend next then you may be able to have all that is needed to defend her against this doctor who may be extra cautious about protecting his license. There are some pros and cons to this because, while you report that your daughter has only had a single tonic-clonic seizure, she may be having seizures that you and she are unaware of and my recommendation will either help your case or, it can help the doctor’s case. My recommendation is that you get a second opinion at an Epilepsy Center from an Epileptologist, which you can typically find one here https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center. You may even want to discuss the possibility of a 7 day VEEG where they do not take her off of her current medication to be sure that the current dosage is controlling her seizures as part of the appeal process. They will do a blood serum check to see if she is compliant with her medication and they will also check for any seizure activity as well as try to induce seizures. If it all comes out well, then she has some evidence to fight against this doctor. If not, well, then they will recommend increasing the medication and you may end up with a doctor that you have a better working relationship. I don’t know what part of California that you live in, but if you live near UCLA, Ronald Reagan Center...Dr. John Stern helped me when I was admitted there twenty years ago. He’s still practicing and he even does telemedicine appointments for new patients that live too far away. I wish you well. 

Hi,Thank you for posting, it sounds like you all are going through a lot.  We understand if can be challenging to find a healthcare team that you’re comfortable working with. If you feel you’re your daughter is not getting the proper care or that you all are not receiving the answers you need or working towards the same goals, it may be time to get a second opinion.  https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions  As Gianna shared in her comment, you all may want to consider seeking more specialized care for your daughter with an epileptologist at a comprehensive epilepsy center. An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy.  https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . The laws determining which medical conditions may prevent someone from driving varies from state to state. Her safety, as well as the safety of others is most important. Continue to talk with her doctor’s (that you all are comfortable with) about your concerns, who can help determine what is best and safest for her. To learn learn more about maintaining a license, the driving laws in your state and mandatory reporting for physicians here: https://www.epilepsy.com/driving-laws/2008791 . Additionally, you may want to contact your local Epilepsy Foundation,here: https://www.epilepsy.com/affiliates . Or you may always contact our 24/7 Helpline:1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline