Tag Archives: seizures

Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker



In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then he explores a new partnership between the TS Alliance and SeizureTracker and how it’s advancing both our understanding of TSC and epilepsy.

First, Dan talks with Tanjala Gipson, MD, Director of the TSC-Associated Neuropsychiatric Disorders Clinic at Le Bonheur Children’s Hospital and Director of the Neurodevelopmental Disabilities Clinic at the Boling Center for Disabilities (01:20). She discusses what factors about the pandemic are causing TAND-related behaviors to be more frequent and severe, how parents can begin to address these behaviors, and what parents should do to manage their own anxiety and prepare for an extended period of time at home during the pandemic. She also answers questions from parents about how to deal with sleeplessness, emotional outbursts, and transitioning from one activity to another. See below for more TAND and COVID-related resources.

Then Dan chats with Rob Moss, creator and co-founder of SeizureTracker.com, and Gabrielle Rushing, PhD, Associate Director of Research at the Tuberous Sclerosis Alliance (24:33). They discuss a new data sharing partnership that will allow SeizureTracker users to connect their seizure data with the TS Alliance Natural History Database, how individuals with TSC can participate in the TSC Biosample Repository Project, and the role patients and patient-reported outcomes play in research and our understanding of TSC and epilepsy. They also talk about how SeizureTracker and the Natural History Database and TSC Biosample Repository are moving research forward and how these tools will continue to evolve in the future. Learn more about how you or your loved one can participate in the TSC Biosample Repository Project.

Resources
TS Alliance TAND web page featuring recordings of TAND webinars: https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/brain-and-neurological-function/tand/
Managing Anxiety During COVID-19 Webinar Recording: https://www.youtube.com/watch?v=m4rHD0Zhdpc
TS Alliance COVID-19 & TSC Resources: https://www.tsalliance.org/individuals-families/covid-19/
TAND 101: The TAND Checklist Webinar Recording: https://www.youtube.com/watch?v=BXO9MopLg9k&feature=emb_logo

TS Alliance and SeizureTracker Partnership Announcement: https://www.prnewswire.com/news-releases/tuberous-sclerosis-alliance-and-seizure-tracker-partner-to-promote-data-sharing-and-biosample-collection-301079871.html?tc=eml_cleartime
Seizures and Tuberous Sclerosis Complex web page on SeizureTracker.com: https://www.seizuretracker.com/SeizureSuccess/TSC_Tuberous-Sclerosis-Complex/
TSC Biosample Repository and Natural History Database web page: https://www.tsalliance.org/individuals-families/biosample-repository-and-natural-history-database/


Episode 10: Expanding Coverage and Ensuring Access to Medications



In episode 10 of TSC Now, host Dan Klein talks to Darcy Krueger, MD, PhD, TSC Clinic Director at Cincinnati Children’s Hospital. They discuss the recent FDA approval of the Sabril label expansion, the study he led that served as supplemental material for that application, and what this process can teach us about the role of physicians, patients and advocacy organizations play in ensuring access to life-saving medications for people with rare diseases like TSC. Finally, they discuss how the TS Alliance can begin to develop evidence-based standards of care.

Then in a brand new segment, Dan catches up with Shelly Meitzler, TS Alliance Regional Program Manager East. They talk about how she first got involved with the TS Alliance, how she draws strength from supporting other families and individuals affected, and why she is running the 2020 TCS New York City Marathon with Team TSC. The TS Alliance has nine spots available for people interested in running the marathon and fundraising with Team TSC, to learn more and apply visit: https://www.tsalliance.org/Team-TSC/ or email Shelly at smeitzler@tsalliance.org.


Episode 8: Excerpts from AES and the Current State of Epilepsy Research



In the eighth episode of TSC Now, host Dan Klein catches up with TS Alliance partners at the annual American Epilepsy Society Meeting (AES), the largest gathering on epilepsy in the world, which was held December 6-10 in Baltimore. Seizures remain one of the most common neurological features of TSC, occurring in 85% of individuals with TSC and more than 50% of individuals with TSC who have epilepsy will not respond to standard antiepileptic medications and have intractable epilepsy. Therefore, this meeting was a good opportunity to explore the current state of epilepsy research, what gaps still exist and what’s on the horizon. Continue reading Episode 8: Excerpts from AES and the Current State of Epilepsy Research


Episode 7: Common Parent/Caregiver Challenges and Advocating for Your Health



In the seventh episode of TSC Now, host Dan Klein explores common challenges parents, caregivers and those affected by tuberous sclerosis complex (TSC) face when managing their health and seeking care from physicians.

First, he has a conversation with Paul Mullin, MD, Director of Neurology and Epilepsy at Medical Associates of the Hudson Valley (01:22). They discuss the results of a survey conducted by Aquestive Therapeutics on some of the most common challenges parents face when trying to administer medication to children with epilepsy and how new technology can help alleviate some of these challenges. They also talk about what parents and caregivers can do to be proactive in addressing seizures and working with their doctor. Dr. Mullin also shares several online resources where parents can get accurate and reliable information and advice, including the Epilepsy Foundation, the National Organization for Rare Disorders (NORD), the National Institute of Neurological Disorders and Stroke (NINDS) and the LGS Foundation.

Next, Dan talks to Peter Crino, MD, PhD, Professor and Chair of the Department of Neurology at the University of Maryland School of Medicine, Director of the TSC Center of Maryland, and a member of the TS Alliance Board of Directors (20:12). We discuss the process of transitioning a patient with TSC from pediatric to adult care, some of the challenges associated with that transition, and how parents and those affected can start preparing to mitigate those challenges. We also talked about how adults with TSC can best manage their care and Dr. Crino emphasizes the importance of following the Consensus Guidelines for Diagnosis, Surveillance and Management of TSC to ensure that different manifestations of the disease are being monitored and managed appropriately throughout one’s lifetime. Finally, we discuss the role telemedicine may play in expanding access to TSC experts.

This episode was sponsored by:

Resources:

Epilepsy Foundation website: https://www.epilepsy.com/

NORD website: https://rarediseases.org/

NINDS website: https://www.ninds.nih.gov/

LGS Foundation website: https://www.lgsfoundation.org/

TSC Center of Maryland website: https://www.umms.org/ummc/health-services/neurology/services/tuberous-sclerosis

Consensus Guidelines for Surveillance and Treatment: https://www.tsalliance.org/individuals-families/treatment-guidelines/consensus-guidelines-for-diagnosis-surveillance-and-management-of-tsc/

Transition resources: https://www.tsalliance.org/individuals-families/young-adults/