Epilepsy surgery in infants and young children living with TSC
This research paper was written by Dr Simon Harvey, who is retiring after a long career at The Royal Children’s Hospital, Melbourne, where he has cared for children with epilepsy for decades. Dr Harvey is well known within the Australian TSC community for his commitment to children with complex, drug-resistant epilepsy and for helping many families navigate difficult treatment decisions. In recognition of his contribution to TSC care and research, he was awarded the Elizabeth Pinkerton Memorial Award in 2024, becoming the first health professional to receive the award twice. His work has had a lasting impact on children with TSC and their families.
About this research
Despite major advances in genetics, medications, brain imaging and surgical techniques, epilepsy surgery in children with TSC remains complex and challenging, particularly in babies and very young children. Seizures often begin early in life, may involve multiple areas of the brain, and can change over time, making treatm
This paper brings together research on epilepsy and epilepsy surgery in TSC, with an emphasis on children whose seizures begin before the age of 3. It explores ongoing debate about where seizures originate in the brain in TSC, highlights findings from long-term clinical research and experience at a specialist centre, and outlines a practical, real-world approach to epilepsy surgery for infants and young children with TSC. The aim is to help families and clinicians better understand how surgical decisions are made in this high-risk group, where early seizure control is important but clear answers are not always available.
How the research was conducted
The paper examines outcomes for 97 children with TSC who underwent epilepsy surgery over almost 30 years at the Royal Children’s Hospital in Melbourne. Some children required more than one operation, resulting in a total of 171 surgeries. Surgical planning relied mainly on brain scans (MRI) and interictal EEG recordings, which measure abnormal brain activity between seizures, rather than trying to capture seizures themselves. This approach reflects the reality that seizures in young children with TSC can be difficult to record and may not clearly show where they begin.
Clinicians looked for ongoing abnormal brain activity on EEG that was present even when seizures were not occurring and matched this information with tubers seen on MRI scans. Surgery was then planned to remove the central part of the tuber most likely to be causing seizures, while preserving surrounding healthy brain tissue. Because many children had more than one tuber contributing to seizures, surgery was sometimes carried out in stages, addressing different areas over time. Children were followed up after surgery to assess seizure control as well as learning, behaviour and overall development.
Outcomes of the research
Just over half of the children – 56% – were seizure-free at their most recent follow-up. A further 34% continued to experience focal seizures, while 10% had ongoing epileptic spasms or more complex seizure patterns.
Developmental outcomes were more variable. Around one in five children went on to have learning and behaviour within the typical range, while many others continued to experience intellectual disability and/or autism. The author emphasises that while surgery can reduce seizures, it cannot reverse the underlying genetic and brain differences that are part of TSC. Surgery was generally safe, and careful planning helped minimise risks by targeting epileptogenic tubers while preserving healthy brain areas. Many children required more than one operation to achieve the best possible seizure control.
Conclusions of the research
The author concludes that epilepsy surgery is a realistic and effective option for many infants and young children with TSC whose seizures do not respond to medication. The research supports the idea that seizures in TSC usually arise from the centre of tubers, making these areas the most important targets for surgery. Early surgical intervention can significantly reduce seizure burden, sometimes allow medications to be reduced or stopped, and may create better conditions for learning and development.
However, the author also highlights that developmental outcomes seem to be modest and vary greatly between children. This reflects the complex nature of TSC itself, where genetics and early brain development also play a role in developmental outcomes. Surgery should therefore be seen as part of an ongoing treatment journey aimed at reducing seizures over time, rather than as a one-off cure.
Implications of the research
For families and carers living with TSC, this research paper reinforces the importance of early diagnosis, close monitoring and timely referral to specialist epilepsy centres when seizures are difficult to control. Epilepsy surgery can reduce seizures and improve quality of life, even in very young children, but families should be prepared for the possibility of multiple surgeries and ongoing support needs. Outcomes vary widely, and seizure control does not always lead to typical development.
For clinicians, the review supports careful use of MRI and EEG to guide surgical decisions and highlights the value of specialised, multidisciplinary care.
Overall, the findings underline the importance of continued investment in epilepsy surgery services and early TSC surveillance to give children the best possible chance of improved seizure control and quality of life.
DISCLAIMER
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.
Harvey AS. Epilepsy surgery in infants and young children with tuberous sclerosis. Epilepsy Behav. 2025 Oct;171:110589. doi: 10.1016/j.yebeh.2025.110589. Epub 2025 Jul 18. PMID: 40683092.
An abstract of the paper can be accessed at: https://www.epilepsybehavior.com/article/S1525-5050(25)00329-4/abstract