Find The Best Care
The best care includes finding the right place, the right team, the right tools, and the right strategies to manage and treat symptoms.
- The right place. A diagnosis of SLC13A5 Epilepsy is best treated at a specialized epilepsy center, where doctors have a higher level of training and multi-specialty care is available. These centers provide comprehensive care for people with epilepsy, seizures, and other symptoms. To find a center near you, visit the National Association of Epilepsy Centers, which accredits Epilepsy Centers. Several Epilepsy Centers have developed an expertise in genetic epilepsies. For assistance in finding care or a referral, contact info@tessfoundation.org.
- The right team. Treating SLC13A5 Epilepsy can be complicated. For many families, the best way to approach treatment is with a “team” approach. A multidisciplinary team may be needed to address the many ways SLC13A5 Epilepsy can affect a patient and their family. Health-care professionals may include:
- a pediatrician (focuses on children),
- a primary care physician,
- an epileptologist (neurologist who specializes in epilepsy),
- a neurologist (doctor who specializes in brain disorders),
- a neuropsychologist (to evaluate cognitive or learning issues),
- a psychiatrist and psychologist (to help with mood and learning disorders),
- a social worker,
- a geneticist and genetic counselors,
- and other therapists (a physical, occupational, and speech & language therapist).
- The right tools. Getting organized early on in your loved ones’ diagnosis will help you manage their care. Consider creating a binder or a folder with key reports like:
- a copy of your genetic report,
- a list of all of your team members and their contact information,
- results from tests,
- and a current medication list.
Your care team might also ask you to keep track of seizures between visits. There are great strategies and digital apps for managing and tracking seizures (e.g., seizure diary), sleep, medications (medicine adherence tools), and more.
- The right strategies. Epilepsy is unpredictable. However, advance planning and taking a few precautions may help you prepare for the unexpected and for emergencies. We urge you to work with your team to develop a Seizure Action Plan, including a strategy for when rescue therapies should be used to stop prolonged seizures or a cluster of seizures. You should also be informed about the risk of Sudden Unexpected Death in Epilepsy (SUDEP) or death from epilepsy or related conditions.
Create a Seizure Action Plan (SAP). A Seizure Action Plan (SAP) helps you organize your loved ones’ seizure information, so that you have it available when you need it. If you have more than one loved one with an epilepsy diagnosis, you should have a SAP for each individual. A SAP may be useful for avoiding and/or being prepared for emergency situations. It is important to share your SAP with your loved ones’ caregivers, educators, and healthcare providers so that they all know what you want to be done for your loved one in the event of a seizure. It also typically includes your loved ones’ current medicines, seizure types, health-care team members, and other related information.- Carry Rescue Therapies. Many people with SLC13A5 Epilepsy have seizures that do not stop on their own and require Rescue Therapy to stop them. Rescue medicine or rescue therapy is a medication taken as needed to help stop a prolonged seizure and prevent a seizure emergency. Rescue medicines may be administered as pills, dissolvables, rectally, or as nasal formulations. Knowing when to administer rescue therapy is important. When to administer rescue therapy depends on the length of the seizure and on whether they are having recurring seizures or multiple types of seizures. Knowing which formulation is best to use for which seizure scenario is important as well. As your loved one ages, the recommended rescue therapies and their dosing will change, so revisit this discussion each time you meet with your health-care team.
- Be SUDEP Aware. Although it is uncomfortable to discuss, it is important to ask your healthcare provider about the risks of death from epilepsy or related conditions. Dying from seizures or other causes may be a concern for persons living with severe forms of SLC13A5 Epilepsy. Most deaths are unrelated to seizures but may result from other neurological disability or pneumonia. Occasionally, deaths can be related to seizures, either due to Sudden Unexpected Death in Epilepsy (SUDEP), seizure-related injury, or status epilepticus (a seizure lasting longer than 5 minutes or seizures occurring close together, without recovery in between). Understanding your risk, knowing what requires emergency treatment, and having a thoughtful, well-communicated plan will contribute to your loved ones’ safety and wellbeing.