Pediatric Dystonia

Dystonia is a disorder that affects the way your body moves. It causes your muscles to contract, which makes them move involuntarily. Or they may become stuck in an abnormal position. Dystonia can affect your entire body or a certain part. The movements can sometimes cause pain.

There are different types of dystonia, depending on which part of your body is affected:

• Hemidystonia affects a leg and arm on one side of your body.
• Multifocal dystonia affects at least two different parts of your body.
• Segmental dystonia affects at least two parts of your body that are next to each other.
• Generalized dystonia affects areas all over your body.
• Focal dystonia affects one particular area of your body.

Experts aren't exactly sure what causes dystonia. But they think it's related to a problem in the part of the brain called the basal ganglia. This is where your brain processes the information that helps your muscles contract. The theory is that your neurotransmitters, the chemicals that do the talking in the brain, are abnormal in people with dystonia. Dystonia, though, doesn't affect your intelligence or your ability to think. It isn’t generally related to mental health issues. Sometimes, dystonia can occur after taking certain kinds of medicines. This is called tardive dystonia.

Research has pinpointed a number of different genetic defects that have been linked to dystonia. Dystonia can also be caused by a stroke, head injury or other injury to the brain. These are called forms of secondary dystonia. In this case, the symptoms may be limited to one side of the body.

The first signs of dystonia can appear at any age, from children (usually between ages 5 and 16) to adults.

Scientists haven't yet determined the exact cause of dystonia. But certain factors can put your child at risk for the disorder. These include:

• Family history (genes)
• Injury to your brain or nervous system
• Stroke
• Taking certain medicines such as neuroleptics
• Infections
• Poisoning such as from lead
• Doing highly precise hand movements

Symptoms may start slowly. For example, you might notice that your child's handwriting is worsening. Your child may get cramps in their feet or they may lose control over their foot and find that it contracts or drags along.

• Involuntary and rapid blinking that your child can't stop
• A sudden tightening or turning of your child's neck to one side, particularly when they're feeling fatigued or stressed
• Trouble speaking
• A tremor in your child's voice
• Symptoms that worsen with tiredness, stress or lots of physical activity

The symptoms of dystonia may stay the same or worsen over time. Some types of dystonia may be associated with other movement problems, such as Parkinson disease, or with psychiatric symptoms.

Diagnosing dystonia is a multistep process because no single test can give a complete answer. Your child's healthcare provider will usually do a physical exam and evaluate their symptoms. They'll also take a personal and family history to find out if your child has any genetic indications for dystonia.

Other tests used to help diagnose dystonia include:

• Imaging of your child's brain with an MRI or CT scan
• Genetic tests to look for known defects linked to dystonia
• Tests to analyze blood, urine and cerebrospinal fluid
• Electroencephalography (EEG) or electromyography (EMG)

Your child's healthcare provider will take an individualized approach to your child's treatment. This may mean using a combination of things to help you manage your child's pain and reduce muscle spasms. Your child's provider may try a number of different medicines that treat dystonia. These include medicines that affect the specific neurotransmitters acetylcholine, GABA and dopamine. Other medicines that your child's provider might prescribe are anticonvulsants or injections of Botulinum toxin.

If your child has a health problem causing dystonia, treating the problem may help the dystonia.

Your child may need surgery to treat dystonia, especially if they aren't able to manage symptoms with medicine. Surgery on the muscles or tendons can release the muscle contractures in some cases. But surgery can have negative consequences, such as destroying parts of your child's brain. Nerve injections can temporarily release the muscle tension as well. Stimulators (deep brain stimulation therapy) can be placed in the brain to help control the muscle movements better.

Other possible treatment methods include:

• New ways to manage stress
• Biofeedback
• Physical or speech therapy
• Wearing a splint on affected parts of your child's body

• Learn about dystonia and treatment options.
• Ask your child's pediatrician to recommend a specialist who knows about dystonia.
• Find support groups so you can learn from others who have dystonia.
• Develop daily strategies that support adequate rest and restorative self-care, such as meditation.
• Develop a support system that includes family, friends, support groups and online resources.
• Investigate complementary therapies, such as relaxation techniques, biofeedback, acupuncture and meditation. Talk with your child's pediatrician about gentle physical exercise options, such as Tai Chi or other soft martial arts.

Any involuntary muscle spasms or loss of control over muscles are symptoms that you should discuss with your child's pediatrician right away.