Community Forum Archive

Hi, Thank you for posting, and we understand this must be very upsetting for you all to experience. If you all feel like you aren't getting the proper care or not receiving the answers you need to help your daughter you all my want to consider seeking out a second opinion 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. Usually led by an epileptologist, the specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families. To learn more and find an epilepsy center and epileptologist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  . Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask her doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you all can utilize, or if they can make any additional recommendations for her. Your daughter may also want to consider keeping a journal or a diary to help keep track of her seizures, medications, and more. My Seizure Diary, can be used to organize her health issues, other therapies or personal experiences, develop seizure response plans, and more, which can be share with her healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s also important to remember that you are not alone, and that you're taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. 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: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents . 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, contactus@efa.org. epilepsy.com/helpline ,or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates 

Hi. I’m a licensed clinical social worker as well as a person with epilepsy. Seizures can take on many forms and AEDs don’t always work. In fact, for about 25% of people who have epilepsy, they have what is called intractable or refractory epilepsy. There is another disorder that is commonly confused with epilepsy called PNES, which AEDs do not help because ii is psychological and mimics seizures. The gold standard for differential diagnosis (confirming the diagnosis) is an extended video EEG monitoring, which is carried out at an epilepsy center by an epileptologist a.k.a. an epilepsy specialist as was described by ConnectHelp in the previous post. I would advise you to ask for at least a 7 day VEEG. Prior to going there though, have all relevant medical records from past neurologists as well as a list of all AEDs that have been tried including adverse reactions (any reduction in seizures even if they didn’t stop all the way), and if possible, get an electronic copy such as a disc or USB version of the other routine EEGs or VEEGs that she has had so that the new doctors can see them for themselves. Also, if she’s had any MRIs, bring that on disc as well. They may do a high resolution MRI as part of the study. Sometimes the doctor that you see for the appointment isn’t the same as the one that observes her inpatient for the VEEG and this helps with objectivity and consultation.  Many doctors thought that my seizures weren’t “real” because they were so unique and I had so many different types, but I went through my second VEEG and all of my routine EEGs and they compared the results, which indicated that I had focal seizures coming from four different lobes in my brain. They have methods for trying to stress out the brain to help a person have a seizure and they monitor the brain 24/7 for the entire time, so many people who have epilepsy do have seizures while they are there. If not, the good ones will have her come back in 6 months for another study or wear a monitor at home.