Recognizing seizures, infantile spasms, and how to get the best care for your child
Seizures Are Common in Children with TSC—And They Can Be Tough to Control
If your child has been diagnosed with Tuberous Sclerosis Complex (TSC), you’ve likely heard about the risk of seizures. In fact, epilepsy is one of the most common medical issues faced by children with TSC.
About 85% to 90% of children with TSC will have seizures at some point [1]. For many, seizures begin in infancy or early childhood. Unfortunately, more than half of these children have seizures that are hard to control with medicine—what doctors call “medically intractable” or “drug-resistant” epilepsy [2].
This matters because uncontrolled seizures can affect your child’s development, behavior, and quality of life. The earlier seizures are recognized and treated, the better the chances of protecting your child’s brain and helping them thrive.
Infantile Spasms: A Type of Seizure That Needs Quick Action
One of the most important types of seizures to know about—especially for babies with TSC—is called infantile spasms. These seizures usually start between 3 and 12 months of age, and they can be easy to miss.
They might look like:
- A quick head nod
- A sudden bending at the waist
- The arms flinging out or pulling in
- Little jerks or twitches that happen in clusters, especially when waking up
These movements might only last a second or two, but they often come in groups and can happen many times a day.
If you notice anything like this, don’t wait—infantile spasms are a medical emergency in babies with TSC. They can seriously affect brain development, but early treatment can make a big difference [3]. Doctors often treat them with a medication called vigabatrin, which is commonly used for children with TSC. Steroids often are used as well.
If your baby is experiencing infantile spasms, there is a high risk they may start losing skills.
So watch for other changes like:
- Your baby suddenly stops smiling
- They lose motor skills like rolling over
- They seem more sleepy or fussy than usual
If you’re concerned, ask your doctor for an EEG test to check brain activity. And trust your instincts—parents often notice things before tests do.
Where You Go for Epilepsy Care Matters
If your child’s seizures aren’t well controlled after trying two medications, then they now have “medically intractable” or “drug-resistant” epilepsy. It’s time to ask for help from a Level 4 Epilepsy Center. These are the most advanced epilepsy treatment centers in the U.S., recommended by the National Association of Epilepsy Centers (NAEC) [4].
Why a Level 4 center? They offer:
- Teams of pediatric epilepsy specialists
- Advanced testing to find out where seizures are coming from
- Options beyond medication, including epilepsy surgery, ketogenic diet, VNS, and responsive neurostimulation
Epilepsy surgery may sound scary, but for many kids with TSC, surgery can dramatically reduce or even stop seizures—and lead to better development and quality of life. Not every child is a candidate, but only a specialized center can do the evaluations needed to know for sure.
TSC Clinics Deliver the Best Care
Families affected by TSC should strongly consider care at a TSC Clinic. These clinics are part of a network recognized by the TSC Alliance and bring together experts who understand the unique and complex needs of people living with TSC. TSC affects more than just the brain – it can involve the skin, kidneys, heart, eyes, teeth, and lungs. These comorbidities often require care from multiple specialists. A TSC Clinic provides:
- A multidisciplinary team of specialists who are experienced with TSC-specific treatments and guidelines
- Coordinated care so you don’t have to manage multiple specialists on your own
- Access to clinical trials and cutting-edge therapies that may not be available elsewhere.
Because TSC is a lifelong condition, having a team familiar with all aspects of the disorder – not just seizures – can improve you or your child’s long-term health and quality of life.
You can find a list of certified TSC Clinics through the TSC Alliance.
You’re Not Alone
TSC can feel overwhelming, especially when seizures are involved. But there’s a lot of support out there—from specialists, national organizations, and other parents who’ve been where you are.
If you haven’t already, consider reaching out to:
- The TSC Alliance for resources and support
- Your child’s neurologist for a referral to a Level 4 Epilepsy Center
- Parent groups for real-world advice and encouragement
Remember, you are your child’s best advocate, and early, specialized care can change the course of their life.
Author: Douglas Smith, M.D., Pediatric Epileptologist at Minnesota Epilepsy Group.
Sources
[1]: Chu-Shore CJ, Major P, Camposano S, Muzykewicz D, Thiele EA. (2010). The natural history of epilepsy in tuberous sclerosis complex. Epilepsia, 51(7), 1236–1241.
[2]: Overwater IE, Rietman AB, Bindels-de Heus K, et al. (2016). Epilepsy in children with tuberous sclerosis complex: chance of remission and risk factors. Neurology, 87(23), 2284–2291.
[3]: Knupp KG, Coryell J. (2017). Infantile Spasms: Evaluation and Diagnosis. Seminars in Pediatric Neurology, 24(3), 150–154.
[4]: National Association of Epilepsy Centers. (2024). www.naec-epilepsy.org