rescue medications

In a special episode of TSC Now, Dan interviews Bridgett Langstaff, mom to Jude, a 17-year-old living with tuberous sclerosis complex (TSC) and epilepsy. Bridgett shares Jude’s diagnosis story and how they ultimately made their way to Mass General Hospital and Dr. Thiele. She also talks about Jude’s ongoing struggle with seizures, from infantile spasms as a baby, to partial seizures, to tonic clonic seizures as he started going through puberty, and she details their journey to achieve seizure control through multiple medications, the ketogenic diet, and surgery. Finally, she shares what it’s like as a parent to witness a prolonged seizure (one lasting longer than 3 minutes) and how and when they decide to administer rescue medication to stop a seizure.

This podcast was sponsored by UCB Biopharma, in an effort to raise awareness of prolonged seizures. UCB was not involved in the content development for this podcast.

UCB is currently running the STARS study, a clinical trial researching an investigational medication for people who experience prolonged epileptic seizures (i.e. lasting more than 3 minutes) who are over the age of 12. The STARS Study is testing an inhaler containing an investigational drug that has been designed to potentially stop a prolonged seizure once it has begun. If you are interested in learning more, visit www.starsepilepsystudy.com to learn more or contact a Patient Navigator to better understand this study at 470-523-2502.

Podcast: Play in new window | Download

In the first episode of TSC Now in 2023, host Dan Klein recognizes International Epilepsy Day (February 13, 2023) and Seizure Action Plan Awareness Week (February 13-20, 2023) by learning about seizure clusters, which are episodes of frequent seizure activity that are distinct from a person’s usual seizure pattern. Seizure clusters may also be called acute repetitive seizures, serial seizures, crescendo seizures or seizure flurries and in every case they are an emergency that often require rescue medication, calling for emergency response or both.

Dan is joined by James Wheless, MD, (01:33) Director of the Neuroscience Institute and Comprehensive Epilepsy Program and Co-Director of the TSC Center of Excellence at Le Bonheur Children’s Hospital, and Professor and Chief of Pediatric Neurology at University of Tennessee Health Science Center. Dr. Wheless describes what seizure clusters are, why they are a medical emergency and how new rescue medications can provide peace of mind to people who suffer from seizure clusters. He also discusses the importance of creating a seizure action plan and how to best implement and refine that plan to make sure it is working. Finally, he emphasizes the importance for parents to meet with their neurologist as soon as they notice irregular seizure activity and to not hesitate to use rescue medication when their loved one experiences an irregular change in the frequency or severity of their seizures.

Resources and Links

Learn more about International Epilepsy Day: https://internationalepilepsyday.org/
Learn more about Seizure Action Plans and Seizure Action Plan Awareness Week: https://seizureactionplans.org/

This episode is sponsored by:

TSC Now

a podcast from the TSC Alliance®

Tag Archives: rescue medications

Episode 52: Prolonged Seizures (Sponsored by UCB)

Episode 42: Understanding Seizure Clusters