Tuberous Sclerosis Program

About the Tuberous Sclerosis Team

At your child's evaluation by the Tuberous Sclerosis team, you meet with the pediatric neurologist and a neurology nurse practitioner.

The success and reputation of the Tuberous Sclerosis team at Cincinnati Children's Hospital Medical Center rests largely on the combined efforts of experts from many disciplines. At your child's evaluation, you meet with the pediatric neurologist and a neurology nurse practitioner, along with specialists from other areas, depending on your child's individual needs.

Tuberous Sclerosis Team Member Roles

Pediatric Neurologist

David Neal Franz, MD, Tuberous Sclerosis Clinic Director, and Darcy Krueger, MD, PhD, manage the medical and neurological problems of tuberous sclerosis patients seen in the clinic, and coordinates input from the other Tuberous Sclerosis team members.

90% 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

Cynthia Tudor, PNP, and Karen Agricola, PNP, are 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.

Gail McMonigle, RN, also works with the team to help facilitate your child's visit with the team and with other hospital services.

Pediatric Nephrologist

John Bissler, MD, treats patients with polycystic kidney disease and renal angiomyolipomas. After the brain, the kidney is the organ next most affected by tuberous sclerosis. Dr. Bissler is one of only two nephrologists worldwide with expertise in managing tuberous sclerosis-associated kidney disease.

Pediatric Psychiatrist

Daniel Nelson, MD, 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. Dr. Nelson and Dr. Franz are available every week to consult and manage this aspect of the disorder.

Pediatric Neurosurgeon

Kerry Crone, MD, an international leader in the development and education in minimally invasive neurosurgery, treats patients who require neurosurgery to treat tumors in the brain or surgical procedures to help treat seizures.

Pulmonologist

Francis McCormack, MD, Chief of Pulmonary Medicine at the University of Cincinnati, and Lisa Young, MD, 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

Elizabeth Schorry, MD, and Anne M. Lovell, CPNP, provides genetic evaluation and counseling to patients and families.

Social Worker

Jeannie Fiser, LISW, learns about you and your family and offers support. She collaborates with the other members of the Tuberous Sclerosis team to ensure that your child's psychosocial needs are met. Jeannie may assist you or your child in offering supportive counseling for family members and helping obtain resources at the time of discharge.

Cardiologist

Timothy Knilans, MD, evaluates and treats patients with cardiac arrhythmias, rhabdomyomas heart failure, which may occur in patients with tuberous sclerosis.

Research Coordinator

Prajakta Mangeshkar, coordinates and oversees all of the research efforts of the Tuberous Sclerosis team. Current projects include open and closed trials for rapamycin, RAD001 and a sleep study.

Pediatric Ophthalmologist

Constance E. West, MD, 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 uniques dental manifestations, including dental pits and fibromas of the gums and mouth / throat. Murray Dock, DDS, MSD, has evaluated and treated over 200 adults and children with tuberous sclerosis, as well as conducted original research on the oral manifestations of the disease.

Tuberous Sclerosis Clinic Coordinator

Melody Gulleman is the primary contact person for information, appointments, research and resources. Mrs. Gulleman helps families arrange transportation, accommodations and appointments with appropriate physicians.