Tuberous Sclerosis Complex (FAQ)
- What is tuberous sclerosis complex and what causes it?
- What are the symptoms of tuberous sclerosis complex?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- Why does my child have tuberous sclerosis complex (TSC) when nobody else in our family has ever had it?
- Why does my doctor want to use vigabatrin which may cause vision loss for my baby's seizures?
- My child needs glasses; is this because of TSC?
- Resources
What is tuberous sclerosis complex and what causes it?
What are the symptoms of tuberous sclerosis complex?
How is it diagnosed?
What is the prognosis?
What is the risk for other family members or future babies?
What treatments/therapies/medications are recommended or available?
How will my child and our family be impacted?
Why does my child have tuberous sclerosis complex (TSC) when nobody else in our family has ever had it?
Why does my doctor want to use vigabatrin which may cause vision loss for my baby's seizures?
My child needs glasses; is this because of TSC?
Resources
Information & Support
Tuberous Sclerosis Complex (TSC)
Assessment and management information for the primary care clinician caring for the child with tuberous sclerosis complex (TSC).
Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.
For Parents and Patients
Support
Tuberous Sclerosis Alliance Support Community
An online support community for individuals and families affected by TSC; sponsored by Inspire.com - membership required.
TSC Community Alliances (TSAlliance.org)
Locations of volunteer groups who work with the TS Alliance to facilitate local connections for individuals and families affected
by TSC.
National Organization of Rare Disorders (NORD)
Information for families that includes synonyms, signs & symptoms, causes, affected populations, related disorders, diagnosis,
therapies (both standard and investigational), and support organizations; National Organization of Rare Disorders.
General
Tuberous Sclerosis Alliance
Information about TSC and access to online communities, supports, and research.
Tuberous Sclerosis (Medline Plus)
Overview with links to reliable sources of more detailed information; from the National Library of Medicine.
Tuberous Sclerosis Information Page (NINDS)
Overview of TSC with emphasis on research and inclusion of links to studies and clinical trials; National Institute of Neurological
Disorders and Stroke.
Tuberous Sclerosis (GARD)
Includes information about symptoms, inheritance, diagnosis, finding a specialist, related diseases, and support organizations;
Genetic and Rare Diseases Information Center of the National Center for Advancing Translational Sciences.
The LAM Foundation
Nonprofit organization that offers information, resources, and grants for research related to lymphangioleiomyomatosis (LAM).
The Healthcare Providers tab on the top of the page provides clinical diagnosis and management information. Other tabs provide
information and resources for families affected by LAM and TSC.
Patient Education
An Introduction to TSC (Tuberous Sclerosis Alliance) ( 2.1 MB)
A 32-page online booklet that provides information about diagnosis, features, genetics, and support systems for families affected
by TSC.
Services for Patients & Families in Utah (UT)
Service Categories | # of providers* in: | UT | NW | Other states (4) (show) | | NM | NV | OH | RI |
---|---|---|---|---|---|---|---|---|---|
Applied Behavior Analysis (ABA) | 48 | 2 | 12 | 9 | 2 | 27 | |||
Autism Programs | 58 | 5 | 2 | 3 | |||||
Behavioral Therapies | 34 | 1 | 8 | 20 | 1 | 31 | |||
Developmental - Behavioral Pediatrics | 9 | 1 | 2 | 2 | 2 | 12 | |||
Early Intervention for Children with Disabilities/Delays | 55 | 3 | 35 | 32 | 3 | 14 | |||
Gynecology: Pediatric/Adolescent; Special Needs | 13 | 1 | 3 | ||||||
Medical Genetics | 8 | 1 | 2 | 5 | 1 | 4 | |||
Mental Health Evaluation/Assessment | 146 | 4 | 10 | 24 | |||||
Neuropsychiatry/Neuropsychology | 9 | 1 | 5 | 9 | |||||
Occupational Therapy | 38 | 1 | 17 | 27 | 2 | 19 | |||
Pediatric Cardiology | 5 | 2 | 4 | 17 | |||||
Pediatric Dermatology | 2 | 1 | 3 | 1 | 1 | 3 | |||
Pediatric Hematology/Oncology | 2 | 2 | 5 | 10 | |||||
Pediatric Nephrology | 1 | 2 | 2 | 10 | |||||
Pediatric Neurology | 6 | 5 | 5 | 17 | |||||
Pediatric Neurosurgery | 2 | 1 | 2 | 4 | 1 | 3 | |||
Pediatric Ophthalmology | 4 | 1 | 6 | 6 | 1 | 8 | |||
Pediatric Pulmonology | 5 | 4 | 4 | 8 | |||||
Physical Therapy | 48 | 12 | 11 | 1 | 5 | ||||
Preschools | 79 | 4 | 30 | 11 | |||||
Psychiatry/Medication Management | 56 | 2 | 49 | 79 | |||||
Sleep Studies/Polysomnography | 6 | 2 | 1 | ||||||
Speech - Language Pathologists | 69 | 4 | 22 | 13 | 4 | 31 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Studies
Tuberous Sclerosis (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.
Clinical Trials/Studies Related to TSC (TSAlliance.org)
A list compiled and maintained by the Tuberous Sclerosis Alliance with clinical trials and clinical studies that have obtained
Institutional Review Board approval.
Page Bibliography
Krueger DA, Northrup H.
Tuberous sclerosis complex surveillance and management: recommendations of the 2012 International Tuberous Sclerosis Complex
Consensus Conference.
Pediatr Neurol.
2013;49(4):255-65.
PubMed abstract / Full Text
Evidence-based, standardized approach for optimal clinical care provided for individuals with tuberous sclerosis complex.
Northrup H, Krueger DA.
Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 international tuberous sclerosis complex
consensus conference.
Pediatr Neurol.
2013;49(4):243-54.
PubMed abstract / Full Text
Key changes compared with 1998 criteria are the new inclusion of genetic testing results and reducing diagnostic classes from
three (possible, probable, and definite) to two (possible, definite). Additional minor changes to specific criterion were
made for additional clarification and simplification.