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Learn about TAND, the checklist for a lifetime, what to expect during evaluation, preparation tips, and key points for individuals at different age ranges. Discover how to effectively prepare for and manage TAND with strategies and annual screenings.
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TAND 101 TANJALA T. GIPSON, M.D. DIRECTOR, TAND CLINIC TSC CENTER OF EXCELLENCE LE BONHEUR CHILDREN’S HOSPITAL MEMPHIS, TN MAY 28, 2019
GOALS • DEFINE TAND • REVIEW TAND CHECKLIST LIFETIME • THE TAND EVALUATION: WHAT TO EXPECT • PREPARING FOR YOUR TAND EVALUATION • KEY POINTS • QUESTION AND ANSWER
TAND = TUBEROUS SCLEROSIS ASSOCIATED NEUROPSYCHIATRIC DISORDERS
TAND • 0-3 • 3-6 • 6-9 • 12-16 • 18-25 • prn >25 Comprehensive formal evaluation
TAND • Practice Parameter based Management Strategies, eg Autism • Consider the need for an IEP • Medical evaluation for sudden behavioral change • Screen for TAND at least annually
TAND EVALUATION: WHAT TO EXPECT • Visit preparation • TAND Checklist • TSC specific concerns • Interdisciplinary team approach • Neurology/neurodevelopmental disabilities specialist • Speech/language pathologist • Social worker • Neuropsychologist • Child Life Specialist • Chaplain (upon request) • Ongoing, individualized management
TAND EVALUATION: HOW TO PREPARE • RECORDS • VIDEOS • TAND CHECKLIST • PATIENT PORTAL SIGN UP • TIME • ACTIVITIES • SNACKS
TAND TAKEAWAYS • Avoid waiting. • It’s never too late or too early. • Research available clinical services and requirements. • Communicate with the TS Alliance. • Don’t give up hope!