Dystonia

Dystonia can affect children and adults. The brain sends incorrect signals that cause the body to have uncontrollable and sometimes painful muscle spasms. The condition can be mild or severe.

In children, dystonia sometimes first appears with a hand, arm, foot, or leg that is twisted and is painful when they try to use it. For some children, only one part of the body is affected (focal dystonia). Others are affected in several parts of the body.

Dystonia is a neurological [NOO-roh-LAH-jik-uhl] condition, meaning the problem starts in the brain. Some children with dystonia have other neurological problems that affect a child’s ability to think. 

Dystonia symptoms may stay the same or they can change over time, getting worse or better. Dystonia may appear in childhood or later in life. Doctors do not fully understand what causes dystonia, although they do know that it can have environmental or genetic causes.

Having dystonia can be emotionally challenging for your child. Be positive and supportive. Help them understand that although dystonia is part of their life, it doesn’t have to become their identity. 

Dystonia causes uncontrollable muscle spasms, although they may be hard to spot at first. Parents often notice that their child has problems with their legs. The child may seem clumsy and not be able to keep up with others. These symptoms usually start out mild and gradually get worse. 

Symptoms include:

• Muscle twitching or spasms that may result in slow, repetitive movements
• Muscle cramping that can cause abnormal posture
• Involuntary movement
• Eyelid twitching
• Vocal cord spasms

Symptoms of dystonia may only happen in one part of the body. Sometimes symptoms spread to other areas over a limited time but then stabilize. Stress and injury can make symptoms worse.

Take your child to see a doctor if your child is experiencing sudden clumsiness or muscle weakness or spasms. They may have dystonia or another condition that shares similar symptoms.

Doctors are not completely sure what causes dystonia, but they know it runs in families. Primary dystonia is caused by a genetic mutation. Secondary dystonia is caused by environmental issues. These include brain injuries from such things as infection, stroke, birth trauma, or a drug or toxin. 

Your child will be referred to a neurologist [noo-RALL-oh-jist] for a diagnosis. Neurologists specialize in brain, nerve, and muscle function. The neurologist will check your child’s reflexes and sensations in bones, muscles, and joints.

Because other conditions may cause symptoms similar to those of dystonia, the doctor will look at all of your child’s symptoms and your family medical history to make a diagnosis. Your child’s specific diagnosis will help the doctor know what treatments could work best.

The neurologist will classify your child’s dystonia by:

• The cause
• How and where dystonia affects your child’s body
• How old your child was when symptoms appeared

How dystonia progresses or is expected to progress

Treatments for dystonia depend on the type of dystonia being treated in your child. There are different types of dystonia. Dystonia also affects every child differently. This means that your child’s treatment will be unique to their situation.

In general, dystonia may be treated with:

• Botulinum toxin (Botox) injections to relax the muscles
• Oral medicine that increases dopamine in the brain to help send signals to other nerve cells
• Surgery, including deep brain stimulation (DBS) or implanting a device that delivers a continuous amount of a medicine that relaxes muscles

Your child’s doctor will create a treatment plan that meets your child’s specific needs. Some of these treatments will try to ease symptoms. Other treatments might help your child develop emotional resiliency to cope with their condition.

Dystonia can’t be prevented. Some types of dystonia run in families, but just because someone has inherited a gene that causes dystonia doesn’t mean they will develop it.

Dystonia [diss-TOE-nee-uh] is a movement disorder that causes muscle spasms due to abnormal signals sent by the brain. It can affect one part of the body of many parts. Symptoms often are mild at the beginning and then get worse, although it may stabilize and even improve over time. Treatment may include medicine or surgery.