Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Founding Director: David N. Franz, MD CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. Coordinator: Kristy Jones, RN, tscoe@lebonheur.org TSC Clinics The Tuberous Sclerosis Alliance (TS Alliance) supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. For TSC Clinic information and to schedule an appointment call Loretta Dunn at (919) 668-4835. Bronx Beginning December 19, 2019, the fourth Thursday clinic permanently changes to the third Thursday. Multiple tubers appear as "cold" on Brain PET. While the tumors typically are non-cancerous, they can cause serious health complications if left untreated. Co-Director: Carol Greene-Roethke, CRNP-APRN University of Alabama Birmingham Tuberous Sclerosis Clinic Age Range Seen: Children and Adults Often undetected. Coordinator: Raeann Moore, RN When this happens, tumors block the flow of spinal fluid. Clinic Frequency: Weekly, every Tuesday. A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599. Coordinated care so patients can access multiple services through one channel. Out-of-State Medicaid Policy: Accepts any that will reimburse. Age Range Seen: New patients up to age 20 years. To schedule an appointment call (501) 364-1850. Coordinator: None Dayton Cincinnati Director: Rohini Coorg, MD TSC Clinic at Arkansas Children’s Age Range: Children and Adult. We do not endorse non-Cleveland Clinic products or services. For Clinic Information call (501) 364-4941. Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children New York City Director: Samir R. Karia, MD Louisville Clinic Frequency: The local practice is to see patients as and when they come. Children’s Hospital of Orange County TSC Clinic Age Range Seen: New patients 12 years and older. Co-Director: Marvin Miller, MD So it is possible for a patient to have both types of seizures. Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC Advertising on our site helps support our mission. Co-Director: Joo Hee Seo, MD, MSc Coordinator: Jan Paolini, RN, MSN, PNP Children’s Healthcare of Atlanta Clinic Frequency: Thursdays, every 2-3 weeks. The Neurofibromatosis and RASopathy Program at Children’s Hospital of Wisconsin Tumors can form on the surface or deep areas of the brain, including the walls of ventricles. TSC Clinic at Helen DeVos Children’s Hospital Age Range Seen: Children and Adults. We do not endorse non-Cleveland Clinic products or services. Age Range Seen: New patients up to age 21 years. Through this program, we also advance our understanding and treatment of Tuberous Sclerosis through collaborative research while providing an educational avenue to families with Tuberous Sclerosis. Clinic Frequency: Weekly on Wednesday. Administrative Coordinator: Erica Sierra For clinic information contact Nicole Forster at (416) 586-4800 extension 2734 and to schedule an appointment contact adultgenetics@uhn.ca or Tabinda Nazeer at (416) 586-4800 extension 5454. Coordinator (adult): Mary Beth Wilbur at University Hospital Age Range: Children and Adults up to age 60 years. Clinic Frequency: Weekly on Thursday at Children’s National Medical Center in Washington DC and monthly on the second Monday at the Regional Outpatient Center in Fairfax, VA. The clinic places a special emphasis on the identification and treatment of autism, intellectual disability, anxiety, ADHD, self-injury and aggression in individuals with TSC. TSC Center at the Columbia University Irving Medical Center/New York Presbyterian Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. TSC Clinic at Institute of Neurology at St. Barnabas Tampa This can be treated early with dermatologic surgery. Clinic Frequency: Daily as Needed Any patients with urgent concerns are prioritized and seen as quickly as possible. For information on the clinic, email Wynne Bird at Bird@childrenscolorado.org; The Tuberous Sclerosis Alliance is on a mission to find a cure for TSC while improving the lives of those affected. It can affect the brain, skin, lungs, kidneys, heart and skin, and can cause epilepsy or learning disability.. Coordinator: Brooke Henry, RN, BSN The TS Alliance does not accredit any TSC Clinic or TSC Center of Excellence, and the TS Alliance does not directly provide or guide any clinical care or medical decision-making. Age Range Seen: Children and young adults up to age 21 years. For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Coordinator: Perla Bautista Muench, RN, BSN Cleveland Clinic is a non-profit academic medical center. Clinic Frequency: Daily For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. Dr. Werner sees all ages, however adults with commercial insurance or Medicare who have mild cognitive (i.e. The Tuberous Sclerosis Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. These are called cardiac rhabdomyomas tumors and generally decrease in size with age. 4543. Age Range Seen: Children only under age 18 years. Through the Tuberous Sclerosis Alliance, we are able to provide families with information to understand TSC and better communicate with their child’s school and teachers. The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Montreal, Quebec Clinic Frequency: Monthly Continuing care from experts who understand Tuberous Sclerosis is the key to successfully managing the condition, mitigating its complications, and providing the best life possible to each individual and family with TSC. Director: Ali Mostajelean, MD Age Range Seen: Children and Adults. Clinic Frequency: Bi-weekly, first and third Wednesday of the month. Advertising on our site helps support our mission. Director: Michael Frost, MD Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante. For more information or to schedule an appointment call (909) 835-1810. Out-of-state Medicaid: Accepts pending pre-authorization from the Medicaid provider. Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital University of Chicago Medical Center clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). Clinic Frequency: First and fourth Monday and third Tuesday every month. To schedule an appointment call (312) 227-3540. Co-Director: Michael Doherty, MD For more information and to schedule an appointment call (551) 497-5470. For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. Age Range Seen: Children and Adults Clinic Ambassador: Bridget Britt, bridget.walsh216@gmail.com Coordinator: Michelle Sanders, LPN Clinic Frequency: Monthly, every second Thursday. Denver Director: Vikram Prakash, MD Some people with tuberous sclerosis have such mild signs and symptoms t… Director: William McClintock, MD Director: Michal Tzadok, MD TSC Clinic at The Cleveland Clinic Coordinator: Lisa Koneazny, RN, BSN If you are an adult with TSC or parent of a dependent adult with TSC, call (650) 498-7551 for New Patient Appointments to be seen by Dr. Scheherazade Le. Epidemiology. Beaumont Children’s TSC Clinic To schedule an appointment, call the neurology scheduling line at (602) 914-1520. Clinic Frequency: Third Thursday of each month. Please read our, Tuberous Sclerosis Clinic at Children’s National, The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital, TSC Clinic at Children’s Hospital of Michigan, TSC Clinic at Nationwide Children’s Hospital, Michal.LeitnerSanigou@sheba.health.gov.il. Cleveland Clinic Frequency: Daily Kari Vanderslice at ( 919 ) 660-3234 to their loved one ’ s Tuberous Sclerosis complex ( TSC.... 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