Rethinking Dravet Syndrome: What Most Families Are Never Told

Dravet syndrome isn’t just rare—it’s often misunderstood.

It’s typically described as a “severe form of epilepsy.” And while that’s true, it barely scratches the surface of what families actually face.

Children with Dravet syndrome don’t just have seizures. They also struggle with muscle tone, motor coordination, language development, immune function, and emotional regulation. Many are told the same discouraging story: expect plateaus. Expect complications. Hope—but don’t expect change.

But what if the story isn’t complete?

What if the symptoms of Dravet aren’t just random expressions of a genetic code, but signals of deeper neurological disconnection?

What Is Dravet Syndrome?

Dravet syndrome is a genetic neurological disorder that begins in infancy. It’s often caused by mutations in the SCN1A gene, which affects sodium channels in the brain. These channels are critical for proper neural communication—and when disrupted, the result is widespread dysfunction.

Most children with Dravet experience:

• Recurrent, prolonged seizures (often triggered by fever or heat)

• Developmental delays (especially in language and motor milestones)

• Poor muscle tone (hypotonia)

• Coordination issues and balance problems

• Cognitive delays and behavioral challenges

• Sensory sensitivity or emotional dysregulation

But these challenges aren’t always due to the seizures themselves.

They’re often due to what the seizures interrupt: the brain’s natural developmental blueprint.

What Conventional Approaches Miss

Standard treatment focuses on managing symptoms—primarily through anti-epileptic medications. While vital for seizure control, these medications don’t address why the brain is struggling to regulate movement, speech, or sensory input.

Families often try therapies—OT, speech, ABA—with little progress. Not because the child can’t improve, but because the system isn’t ready to receive that input yet.

That’s the gap we fill.

Our Neurological Lens: Start With the System

When we see a child with Dravet, we don’t start with seizures. We start with systems.

We assess:

• Primitive reflexes still running in the background

• Mitochondrial energy output and inflammation markers

• Brain-body communication through movement, muscle tone, and balance

• Gut and immune load impacting neurological regulation

Why? Because every child has a blueprint for development—and Dravet doesn’t erase that. It interrupts it.

And if we can find where development got paused, we can restart it.

Real Results Start With Real Reassessment

At Infinity, we’ve seen children who were stuck in chronic inflammation suddenly begin to regulate once the right brain circuits were activated. We’ve used targeted tools—neuromotor reboots, mitochondrial support, sensory integration—to wake up dormant systems.

Seizures may still exist. But the child becomes more present. More coordinated. More responsive.

And most importantly—more connected.

That’s the part most families are never told: Dravet doesn’t have to mean decline. With the right neurological inputs, we’ve seen improvement—sometimes rapidly.

If you’ve been told there’s “nothing else to do,” we’re here to offer a new question: What if there is—and what if it starts with the brain?

This isn’t theory. It’s what we do every week inside Infinity.