Q&A: Deep Brain Stimulation (DBS) for Pediatric Epilepsy & Primary Dystonia

DBS typically enters the conversation when other treatments have failed or aren’t available.

Do the following apply to your child?

Epilepsy

• Type: Generalized epilepsy, meaning seizures originate in and affect both sides of the brain
• Medication not working: Your child has tried two or more medications without relief — either because the medication hasn’t helped much, or causes intolerable side effects

Dystonia

• Type: Primary dystonia, meaning your child’s dystonia is not caused by something else like an underlying neurological disorder
• Medication not working: Medication hasn’t helped much, or causes intolerable side effects
• Other treatments not effective: Other available approaches to treatment, like botulinum toxin injections or physical and occupational therapy, haven’t helped much

Read the success story of one patient, Bella.
 

DBS uses electrical stimulation to modulate abnormal brain activity, reducing the frequency and severity of seizures (in the case of epilepsy) or involuntary movements (dystonia).

Here’s how it works.

• Surgery: A neurosurgical team places two small electrodes in targeted areas of the brain.
• Implanted device: These electrodes are connected to a small device, similar to a pacemaker, placed under the skin of the chest. It sends gentle electrical signals to help regulate abnormal brain activity.
• Regular follow-ups: After surgery, your child will have regular visits with their neurologist to adjust the device’s settings for maximum benefit over time, including as they grow.

Q: Is DBS already FDA-approved?

For adults, yes — in patients 18 and over, DBS has long been FDA-approved and used safely for conditions like epilepsy, Parkinson’s disease and essential tremor. Every year, this list of FDA-approved uses continues to grow.

For kids, it’s a little more complicated. Here are the details.

Epilepsy:

• Under age 18, DBS is considered off-label: It’s offered to patients with the understanding that the FDA has not yet approved it for this specific age and diagnosis.
• Keep in mind: Off-label therapies are common in modern medicine. This is especially true in children’s health, where many treatments are based on the best available science — even before formal FDA approval catches up.

Primary dystonia:

• Ages 7 and older, DBS is offered via a Humanitarian Device Exemption (HDE) from the FDA, a special category for rare diseases.
• The HDE approval only applies to certain types of chronic, intractable primary dystonia.

Bottom line: We want kids in our community to have every promising treatment available to them. If your child has pediatric epilepsy or primary dystonia, Connecticut Children’s and UConn Health are proud to discuss whether DBS is right for your child and family, ensuring access to the full spectrum of surgical options for these diagnoses.
 

DBS isn’t usually a cure — but it can make a meaningful difference.

• Epilepsy: Studies show that roughly two out of three DBS patients will experience at least a 50% reduction in seizure frequency.
• Primary dystonia: Researchers report a range of improvement from DBS, depending on factors like genetic type, age of onset, and disease duration.

Every bit of improvement can represent a major shift in a child’s quality of life: fewer falls, fewer hospital visits, and more time just being a kid.

Q. Who should I ask about DBS for my child?

Start with your child’s neurologist or primary care provider, and let them know you’d like to learn more about DBS. 

If you’re in our region, ask for a referral to Connecticut Children’s Neurology team — or call us directly at 860.837.7500.

• Who you’ll meet: For epilepsy, you and your child will meet with one of our four epileptologists. For dystonia, you’ll meet with our dystonia expert.
• What to expect: We’ll arrange any necessary evaluations, help you understand the treatment options, and together, determine whether DBS is right for your child.

DBS usually isn’t the first step in a child’s treatment — but for many families, it can be the right next step. And its future for kids is just beginning.