Deciding Together

An informative website to help you and your family make choices about Deep Brain Stimulation for Childhood Dystonia.

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Considering Deep Brain Stimulation for Childhood Dystonia

If you care for a child with refractory dystonia, you may be considering deep brain stimulation (DBS) therapy. For children whose symptoms are resistant to other treatments, DBS may provide significant benefits.

Because DBS is an invasive neurosurgical procedure, you have to decide whether the treatment is right for your child and family. DBS has risks, benefits, and challenges. It’s important to talk about your options with your family and your medical team. This decision aid can help you with those conversations, and provide the facts you need to make an informed decision.


What is Childhood Dystonia and How Can it Be Treated?

Dystonia is a severe movement disorder that occurs in both adults and children. Common symptoms of dystonia include uncontrolled muscular contractions, which can cause skeletal deformities. There are many effective treatments for dystonia, but these treatments may not work for some patients.

Learn More About Childhood Dystonia

DBS stands for Deep Brain Stimulation. DBS is a neurosurgical procedure that can be used to treat dystonia in children. When patients have exhausted other available treatment options, DBS may be recommended by a clinician. DBS does not cure treatment-resistant dystonia or instantly alleviate symptoms. Instead, DBS has the potential to improve a child’s quality of life.

Learn More About Deep Brain Stimulation
About DBS Surgery

DBS requires surgery to implant electrodes in specific regions of the brain. The number of surgeries will depend on the individual patient and the judgment of their clinician. There are risks and benefits to deep brain stimulation for childhood dystonia. If you decide to pursue DBS surgery for your child, it’s important to know what to expect before, during, and after the procedure.

Should Your Child Have DBS Surgery?

People make different choices about whether or not to pursue DBS for childhood dystonia. It’s important to weigh the benefits, risks, and challenges of DBS and DBS surgery for your child. It’s also important to set expectations around recovery, supportive care, and quality of life for your child and your family. Reviewing the facts and figures will help you make an informed decision.

Becoming a Caregiver

If your family decides to pursue DBS for your child, it will have an impact on your role as a caregiver. Your child may need tests before surgery, and they may require an extended hospital stay or additional surgeries. Following surgery, regular visits are required for device programming. Cost of treatment, insurance coverage, and taking time away from work are also important considerations when caring for a child with a DBS device.

What Can You Expect from DBS?

After a patient has healed from DBS surgery, the device that delivers electrical stimulation to the brain can be turned on. The patient and their healthcare team work together over time to adjust the device settings to fit the patient’s specific needs.
Outcomes for every patient are different. Understanding what to expect from DBS can help you, your child, and your family prepare for life after surgery.

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