Tag Archives: TAND

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 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1)



In episode 14 of TSC Now, host Dan Klein begins the first of an important two-part discussion focused on how parents can begin to address aggressive and harmful behaviors associated with TSC-associated neuropsychiatric disorders (TAND), while continuing to shelter at home during the ongoing COVID-19 pandemic.

For part one of this conversation, Dan is joined by Nathan Call, PhD, BCBA-D, Clinical Director at the Marcus Autism Center and Associate Professor at Emory University School of Medicine, Department of Pediatrics. They talk about how the pandemic has created a perfect storm of altered routines, restrictions and barriers to specialists that can lead to an increase in the frequency and severity of behaviors. Dr. Call also shares the importance of prioritizing what behaviors to address and being flexible with the uncertainty. Finally, Dr. Call talks about some of the barriers preventing families from getting access to behavioral specialists and medication to manage their kid’s behaviors.

The TS Alliance is always here to provide support to parents who are dealing with challenging behaviors or are in crisis. You can call us toll free at (800) 225-6872. Be sure to also check out our website for more information on TAND.

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/
How to Manage Disruptive and Harmful Behavior During COVID-19 Interview with Dr. Call courtesy of the Child Neurology Foundation: https://www.youtube.com/watch?time_continue=688&v=m8tL2xad5i8&feature=emb_logo
Webinar on Effective Behavioral Treatments for TSC-Associated Neuropsychiatric Disorders (TAND) Issues in TSC: https://www.youtube.com/watch?v=c5MWX7VEni4&feature=emb_logo


Episode 12: Living with TSC During COVID-19



In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the episode he shares resources the Tuberous Sclerosis Alliance (TS Alliance) has developed to support the community during the pandemic, and plays clips from past webinars hosted by the TS Alliance and our partner advocacy organizations. He also interviews two guests to better understand how COVID-19 is affecting both individuals and families and TSC clinics.

First he speaks with Laura Lubbers, PhD (3:50), Chief Scientific Officer at Citizens United for Research in Epilepsy (CURE). Laura’s sister Ellyn is an adult with TSC and was taken to the hospital earlier this month when she developed a fever and later tested positive for COVID-19. Laura shares about what that experience was like and how she helped coordinate Ellyn’s care remotely. Fore more resources from CURE visit: https://www.cureepilepsy.org/for-patients/covid-19-and-epilepsy/.

Next, he speaks to Karen Agricola, MSN, APRN, FNP-BC (21:20), a family nurse practitioner and coordinator at The Tuberous Sclerosis Clinic at Cincinnati Children’s Hospital. She shares how the clinic has adapted care during the pandemic and offers advice on how to stay safe and utilize telemedicine to maintain care. 

Dan closes out the episode by playing a clip of TS Alliance President and CEO Kari Luther Rosbeck (37:30), who introduces our TSC Awareness Month of Caring and shares how you can support the TS Alliance throughout the month of May.

Finally, be sure to join us for our next Virtual Town Hall on Friday, May 1: “Accessibility to Treatments During COVID-19,” co-sponsored by the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation and Tuberous Sclerosis Alliance. You can register now here: https://zoom.us/meeting/register/tJ0of-ipqT4iE9KhuijP08JP9wL3j-_tmRzO

Resources and Links:

This episode was sponsored by:

       


Episode 9: The State of the TS Alliance



In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s 45th anniversary year in 2019, the major goals and initiatives for the organization in 2020, the newest members of the team, and upcoming events at the TS Alliance. Be sure to sign up for the TS Alliance bimonthly e-newsletter, TSC Matters, to stay up-to-date on everything going on at the TS Alliance throughout the year. You can subscribe to TSC Matters at https://www.tsalliance.org/tsc-matters/.

Want to submit a future episode topic for consideration? Send us an email at tscnow@tsalliance.org.

Upcoming Events

  • March on Capitol Hill, TS Alliance Board and Endowment Board Meeting, and Volunteer Leadership Summit – March 3-5, 2020 in Washington, DC.
  • First Step Forward to Cure TSC Walk – Saturday, April 4, 2020 in AZ.
  • Comedy for a Cure 2020 – Sunday, April 5, 2020 in Los Angeles, CA. Learn more: https://tsalliance.schoolauction.net/comedy2020/
  • Sound Bites Minnesota – Friday, May 8, 2020 in Golden Valley, MN.
  • Newborn Screening Workshop – June 2-3, 2020 in Silver Spring, MD.
  • Regional TSC & Lam Conferences (dates tentative and subject to change)
    • June 20, 2020 – Memphis, TN
    • September 26, 2020 – Gainesville, FL
    • October 24, 2020 – Denver, CO

Resources and Links:


Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)



In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in South Africa. They discuss tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders, otherwise known as TAND. TAND refers to a whole spectrum of neurological manifestations of TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties. Most people with TSC suffer from one or several of these manifestations and it is often one of the most impacting aspect of the disease for both children and adults affected. They talk about the six levels of TAND (behavioral, intellectual, neuropsychological, psychiatric, academic and psychosocial) and the different manifestations people experience within each level. He also talks about the challenges families and caregivers face when seeking treatment for these manifestations.

In response to the growing need of those affected, Dr. de Vries shares how he worked with other experts at the 2012 Consensus Conference to develop the TAND checklist, a tool to help clinicians identify what aspects of TAND a person is struggling with and develop a personal profile for those affected, and the corresponding consensus guidelines for when and how to use the checklist. He also discusses that, while no two people are affected the same and this uniqueness poses significant challenges for diagnosis and intervention, recent research suggests that there are several TAND “clusters” that those affected generally fall into.

Finally, Dr. de Vries discusses the TANDem Project, an international collaboration of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The project is being headed by Drs. de Vries and Anna Jansen at UZ Brussels.

To learn more about TAND visit: www.tsalliance.org/tand

To download the TAND Checklist visit: https://bit.ly/2ObP3wn

To learn more about TAND clusters visit: https://www.ncbi.nlm.nih.gov/pubmed/29530301

Learn more about the TANDem project here: https://bit.ly/2MkQyqy


Episode 3: The 2019 International TSC Research Conference



In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing the Course of TSC. Continue reading Episode 3: The 2019 International TSC Research Conference