Dystonia Treatments

Treatments for dystonia often focus on:

• Reducing pain by decreasing dystonic movements that may be causing pain
• Increasing comfort
• Improving sleep
• Increasing the ability to address daily personal needs independently or with a caregiver. These kinds of activities may include bathing, dressing, eating, personal hygiene, toileting and more.
• Increasing participation in daily activities
• Reducing stress and anxiety

Once treatment possibilities are identified, they should be started as soon as possible. A treatment plan can be developed with the assistance of a multi-disciplinary team (if you have access to one) that will help you choose potential treatments and strategies for managing dystonia symptoms that match your goals and concerns.

Treatment Types

Several medications and types of surgeries have been used to manage the symptoms of dystonia. Research is still in its infancy for treatments of dystonia in cerebral palsy and there is not much formal information and research to guide clinicians. Many of medications that are prescribed for DCP are based on the research and outcomes studied and published for people who have other types of dystonia.  This means that most of the options used for treatment of DCP are what is referred to as “off label.”

When a medication is used outside of the specifications outlined in the FDA’s approved medication packaging label, or insert it is referred to as an “off label” use or prescription. This practice is legal and very common since there aren’t enough resources (ie money for research) to determine how every medication affects a particular population.

The CP community is still in need of better and more effective options to address their symptoms. Ask your medical team if you are interested in understanding the current state of research for proposed medications and/or interventions.

Here are a few examples of medical treatments you may hear about:

• Oral medication-You may hear about several options depending on the symptoms you are trying to address, the type of dystonia (ie generalized or focal dystonia) and the goals you share with your clinical team. Some oral medications intended to target and reduce dystonic movements may be used if the dystonia is causing pain or interference where the dystonic movement gets in the way of voluntary/functional movements.
• Botulinum toxin A injections-The focus of this treatment is to relax muscles by injecting botulinum toxin directly into the affected muscles.
• Intrathecal baclofen- A neurosurgical treatment where small amounts of baclofen are released slowly and directly into the spinal cord area.
• Deep Brain Stimulation (DBS)-A neurosurgical procedure where electrical impulses are used to target areas of the brain that may be generating involuntary movements associated with dystonia.

Therapy consultations and related tools are often used together with oral and neurosurgical medical interventions. Some examples of tools that may be used to reduce the symptoms of dystonia include:

Manual/Hands-on strategies- In some cases clinicians may demonstrate ways to provide sensory input to the individual with DCP,  such as touching the affected body part in a specific manner, or repositioning the individual. These simple tools may be very effective in addressing certain symptoms of DCP.

Psychological interventions- May be used to prevent triggers of dystonia (i.e. stress, anxiety) such as relaxation techniques including mindfulness/breathing exercises or cognitive behavioral therapy or CBT which is a specific type of psychological intervention.