Our Approach to Care
An Early and Accurate Diagnosis
Our multidisciplinary team of TSC experts is exceptionally skilled at identifying the signs and symptoms of TSC. The disorder is often detected at or before birth by the presence of heart lesions (rhabdomyomas) seen on ultrasound, which may signal the need for further evaluation. Parents have access to the expertise of prenatal specialists in the renowned Carmen and John Thain Center for Prenatal Pediatrics at NewYork-Presbyterian Morgan Stanley Children's Hospital. Other people learn they have TSC later in life when they experience seizures, delays in development, cognitive impairment, behavioral problems, lung disease, and kidney problems.
If your child is diagnosed with a seizure disorder, they should be evaluated by a pediatric epileptologist, a neurologist specializing in epilepsy in children. The best place to be evaluated is at a major center for pediatric epilepsy, where a full range of treatment options are available. NewYork-Presbyterian is nationally known for its comprehensive treatment and ground-breaking research into epilepsy in both adults and children. Our pediatric epileptologists work closely with pediatric neurologists and neurosurgeons to determine the best plan of care for each child.
Multidisciplinary Team Approach
For children with TSC, different types of specialists are required to provide the expert consultation and skillful care that each child will need. The timing of such care is also critical to achieving the best outcome. We put together a personalized, multidisciplinary team of experts with the training and expertise to meet your child's unique needs. Your child has access to a team of pediatric specialists including pediatric neurologists, pediatric neurosurgeons, genetics experts, and kidney, heart, and lung specialists. If your child needs health care for another medical condition, we have specialists and subspecialists onsite to meet those needs as well.
Personalized Treatment
The signs and symptoms of TSC may vary from one person to the next, with different organs affected at different times in a person’s life. We assess the unique needs of each of our patients at each point in life to customize a plan of care. We monitor our patients regularly to see if their TSC has progressed to involve new organs.
Transitional Care to Adulthood
At NewYork-Presbyterian, we help teens and young adults with TSC prepare to move from pediatric care to adult services. The decision at what age to transition varies from family to family but can begin during early adolescence. Typically pediatric patients have fully transitioned to adult care by age 22. This transition is important because policies and procedures vary from our pediatric and adult services. You should speak with your child’s neurologist about making the transition from pediatric to adult care. Your doctor can make recommendations based on your child’s maturity level and readiness to take on the responsibilities of care. When it is time, we help our patients seamlessly transition to one of our adult physicians in the NewYork-Presbyterian Neurology & Neurosurgery program.