Dystonia in children

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Early treatment can help your child overcome pediatric dystonia and lead an active life. Our pediatric neurologists have the experience to recognize the nuanced signs of this movement disorder. They make a detailed diagnosis and get your child prompt, effective care. We also provide all the support your family needs.

What is dystonia?

Dystonia is a movement disorder, one that’s also called early-onset dystonia when it affects children. Children with dystonia experience moments when they can’t control some of their muscles. The muscles contract without coordination and may work at odds with each other, leading to twisting and contorting. Children may also look like they’re shaking.

For some children, dystonia has a trigger such as trying to walk or write. The disorder can affect a single body area, a few areas or muscles all over. Even when it starts out affecting one area, it can spread to additional areas.

Researchers believe dystonia is tied to the parts of the brain responsible for movement, including the basal ganglia. Some children with dystonia also have cerebral palsy.

What causes early-onset dystonia in children?

Doctors can’t always determine the cause of dystonia in children. Occasionally, pediatric dystonia is tied to genetic changes inherited from parents – changes that medical providers can sometimes look for with tests.

More commonly, early-onset dystonia is caused by damage to the brain, including from:

Accidents
Birth complications
Brain tumors
Exposure to toxins

Infections
Neurological diseases, some of them inherited
Side effect of certain medications
Strokes

Dystonia symptoms

Some children with dystonia have mild symptoms, while others may experience symptoms that worsen over time. Pediatric dystonia symptoms can happen frequently or come and go.

Signs of pediatric dystonia may include:

Anxiety and depression
Cramping and pain
Jerking or twisting movements
Loss of neck control (including twisting or tilting)
Rapid blinking or closing eyes uncontrollably
Stiffness in muscles (spasticity)
Trouble speaking or swallowing

Dystonia diagnosis

Dystonia is a complex disorder, one with a range of possible causes and sometimes mistaken for other conditions. Our doctors have the expertise to determine what’s going on with your child.

Doctors categorize dystonia by which muscles it affects, how often it happens and whether it’s triggered by something specific. We diagnose the disorder by:

Collecting your child’s medical history
Discussing possible risk factors or environmental exposures
Giving a neurologic and physical exam
Ordering blood or urine tests
Performing imaging
Running electromyography (EMG) testing of electrical activity in muscles

We can also arrange genetic counseling for your family and help you determine if genetic testing is right for you. Learn more about our genetics program.

Dystonia treatment

How dystonia impacts a child’s life depends on the cause, if known, the muscles affected, and the intensity and frequency. Early treatment is crucial, with many children going on to lead active lives.

Specialists from our neurology program ensure your child receives prompt care tailored to their specific needs. Medications, injections and therapy can all help. We can also help you find additional support to help your child’s quality of life, including mental health care.

Medications help relieve symptoms for some children. We make careful recommendations, then watch how your child responds, weighing benefits against any side effects. Medications we recommend affect neurotransmitters, the natural chemicals the nervous system uses to communicate. We closely follow your child to determine if therapy changes are needed.

Injecting Botox into muscles can treat dystonia contained to a certain part of the body. Botox blocks the signals from the nerves to the muscles, temporarily relieving unusual movements and postures.

Both speech therapy and physical therapy can help children with dystonia. If needed, speech therapists work with your child on chewing, talking and swallowing. Physical therapy can help relieve spasms in many parts of the body.