An update from Perth Children’s Hospital for our TSC Community in WA, February 2025

We are pleased to report that Perth Children’s Hospital’s VEEG program* has now recommenced. The hospital tells us that addressing patients that have been waiting for VEEG is the priority for approximately the next 6 months and that the PCH Neurophysiology Department will manage the waitlist and contact families to make appointments for VEEGs.

Also, this month a new Clinical Nurse Specialist (CNS) for Epilepsy has commenced at Perth Children’s Hospital.  In the coming months, the CNS will lead work to review services offered for children and families in WA living with TSC against the clinical recommendations and through national benchmarking.  

We hope these initiatives are both positive steps forward for children and families living with TSC in WA.

If any families in WA have specific questions or concerns, please do call us on 1300 733 435 or email us at [email protected]

* VEEG is used to monitor brainwaves and seizure activity over multiple days and is often used in the diagnosis, management and work up for surgery for patients with TSC who have retractable epilepsy.