What to Expect
Typical Visit | Patient Testimonials
Typical Visit
A typical visit to the Tuberous Sclerosis Clinic at Cincinnati Children's Hospital Medical Center includes evaluation and treatment planning with the pediatric neurologist or neurology nurse practitioner. You or your child also may see specialists from other areas, including:
To provide the best care, our doctors need to review your child's medical history prior to the first visit.
New patient appointments and appointments involving multiple specialties take longer than a routine doctor's appointment and can last several hours.
All members of our multidisciplinary team are involved in each patient's care, no matter who you see at your appointment. Because of this multidisciplinary approach, each appointment is tailored to the patient's needs. A patient can see any of the following clinical specialists:
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Clinical Specialists
- Pediatric Neurologist: manages the medical and neurological problems of tuberous sclerosis patients seen in the clinic, and coordinates input from the other Tuberous Sclerosis team members. Ninety percent of patients with tuberous sclerosis experience seizures, or some other kind of neurologic problem at some point in their life. This is the organ system that is most commonly affected by the disease.
- Neurology Nurse / Nurse Practitioners: independent practitioners who are able to prescribe medications, coordinate care from various team members, and help manage tuberous sclerosis-related medical and neurological problems. They also provide counseling and support to families about the disease and its affects on other family members.
- Pediatric Nephrologist: treats patients with polycystic kidney disease and renal angiomyolipomas.
- Pediatric Psychiatrist: evaluates behavioral and psychiatric issues in children with tuberous sclerosis. Parents / families dealing with this disease know these are some of the most difficult issues they face.
- Pediatric Neurosurgeon: treats patients who require neurosurgery to treat tumors in the brain or surgical procedures to help treat seizures.
- Pulmonologist: offer consultation, treatment and diagnostic testing for children and adults with pulmonary issues related to tuberous sclerosis.
40% of women with tuberous sclerosis have lung disease known as LAM (Lymphangioleiomyomatosis). This is a progressive disorder that can result in pulmonary failure and require lung transplantation.
- Geneticist: provides genetic evaluation and counseling to patients and families.
- Social Worker: learns about you and your family and offers support. They collaborate with the other members of the Tuberous Sclerosis team to ensure that your child's psychosocial needs are met. They may assist you or your child in offering supportive counseling for family members and helping obtain resources at the time of discharge.
- Cardiologist: evaluates and treats patients with cardiac arrhythmias, rhabdomyomas heart failure, which may occur in patients with tuberous sclerosis.
- Research Coordinator: coordinates and oversees all of the research efforts of the Tuberous Sclerosis team.
- Pediatric Ophthalmologist: treats tuberous sclerosis patients suffering from eye problems caused by the disease.
Many people with tuberous sclerosis develop ocular tumors, or require treatment with vigabatrin for infantile spasms or other types of seizures. Vigabatrin, although highly effective, can cause loss of peripheral vision. Dr. West monitors and treats for these ophthalmologic complications of the disease.
- Pediatric Dentist: Tuberous Sclerosis causes unique dental manifestations, including dental pits and fibromas of the gums and mouth / throat.
- Tuberous Sclerosis Clinic Coordinator: the primary contact person for information, appointments, research and resources. They help families arrange transportation, accommodations and appointments with appropriate physicians.
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Testing
If needed, certain tests may be arranged during or after the visit. These tests may include:
Other testing may be recommended and can be scheduled later.
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Follow-Up Care
Follow-up visits provide ongoing management of medical, neurological and psychological problems for children and adults to age 21 years. Adults over 21 can be seen for diagnosis, counseling and treatment or to provide consultation to your primary doctor.
Follow-up visits in the Tuberous Sclerosis Clinic at Cincinnati Children's are scheduled for specific issues, such as seizures or behaviorial problems. You and / or your child will be scheduled with those specific health care providers as needed.
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Patient Testimonials
The Tuberous Sclerosis Clinic at Cincinnati Children's Hospital Medical Center is changing the outcomes for patients and their families. As part of our belief in the compassionate, respectful family-centered care of every patient and family, we understand that the best reassurance and support for our families comes from stories shared by other families in similar situations.
Here are some stories of Cincinnati Children's Tuberous Sclerosis Clinic patients and their families.
- Ryan McVicker was diagnosed with tuberous sclerosis at age 6 months.
Read more stories from patients and families at Cincinnati Children's.
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