Pseudotumor Cerebri Collaborative Clinic

In the Pseudotumor Cerebri Collaborative Clinic at Children’s Hospital of Philadelphia (CHOP), neuro-ophthalmologists, an endocrinologist, and in many instances a dietitian work together to care for patients with pseudotumor cerebri syndrome (PTCS).

In children with PTCS, cerebrospinal fluid pressure around the brain is elevated. This causes symptoms such as headaches, nausea, double vision and vision loss.

The optimal treatment of PTCS involves a multidisciplinary approach that addresses its causes as well as its symptoms. Our team will work closely with you to evaluate, treat, and manage your child’s PTCS.

Our approach to care

Children cared for by CHOP's Pseudotumor Cerebri Collaborative Clinic will have access to an expert team experienced in caring for children with this disease. Dr. Grant Liu, a neuro-ophthalmologist, is considered one of the world’s experts on pediatric PTCS. Dr. Shana McCormack, a pediatric endocrinologist, has written extensively on the topic of pediatric PTCS, often with Dr. Liu. Dr. Robert Avery, also a pediatric neuro-ophthalmologist, is an international expert on spinal fluid pressure and optic nerve imaging.

Our entire team will work closely with you to evaluate, treat and manage your child’s PTCS. Core elements of your child's care will include the following:

  • PTCS can cause vision loss, so your child will be monitored by one of our neuro-ophthalmologists. The neuro-ophthalmologist will also monitor your child’s medications.
  • Because PTCS can be caused by an undiagnosed hormonal or medical problem, it is important for your child to undergo a thorough evaluation with our endocrinologist. The endocrinologist may recommend blood tests or other testing procedures to identify potentially treatable causes of PTCS. Also, individuals who develop PTCS in the context of excess weight gain may benefit from evaluation of both the causes and consequences of being overweight or obese. Finally, because some of the medications used to treat PTCS may affect weight or growth, the endocrinologist can help monitor children who are undergoing treatment.
  • Attaining a healthy weight is very important in the treatment of PTCS. At CHOP, your child will work closely with the PTCS clinic’s dietitian, as well as have the option to work with the hospital’s Healthy Weight Program.

The clinic is held primarily on the third Thursday of the month, but some appointments are also available on the first Thursday of the month.

Learn more about how to make an appointment with our clinic and what to expect during a visit.

PTCS research

Research is a priority at CHOP, where physicians and scientists are constantly working to improve patient care. The PTCS team has multiple ongoing projects aimed at understanding and improving ways to evaluate and treat children, adolescents, and young adults with PTCS.