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Epilepsy clinic update - In the know

The Children’s Health Epilepsy Center joined the Epilepsy Learning Health System (ELHS) in December 2019. Since then, we have taken part in several projects to learn more about the care we provide your child and family.

  • Telemedicine: At the start of the COVID-19 pandemic, our team helped lead a telemedicine workgroup. Some of you may have been asked questions about your experience with telehealth appointments. This was all a part of our work with ELHS. We then took that information and have used it to guide our plans for using telemedicine over the past year.

  • Improving Patient Care: You might have noticed us asking some new questions before or during each appointment about medications, missed doses of medications, types and frequency of seizures, and how seizures or medication side effects affect the life of your child and family. Each month, our team looks at the information to find new ways to support your child and family better.

  • Epilepsy Registry: We are also enrolling patients in the Epilepsy Registry. One of our team members may reach out to you by phone or meet with you during your child’s clinic visit to discuss the program and how this research helps improve care for your child. If you are interested in enrolling your child in this study, please reach out to our Epilepsy Program Manager, Bonnie Johnsrud, at email iconepilepsyprogram@childrens.com.

  • Patient Family Partners (PFPs): We also meet regularly with some of our patient families, Patient Family Partners (PFPs), and with the Epilepsy Foundation of Texas (EFTX). We use this time to get ideas about what projects are important to our patient families and how we can partner together to improve care. If you have an interest in being a Patient Family Partner (PFP), please talk with your provider. We are grateful for the opportunity to work with each of you to improve care for your child and family.