Pediatric deep brain stimulation (DBS)

What is a pediatric deep brain stimulation (DBS)?

Deep brain stimulation (DBS) involves implanting electrodes in the brain and using electrical impulses to help control abnormal movements. DBS offers another option for children whose movement disorders can’t be controlled with medications.

In DBS, surgeons implant electrodes in the parts of a child’s brain that control movement. They also insert a pulse generator near the collarbone. The pulse generator sends electrical signals to the electrodes, which reduces the brain activity that causes unwanted movements.

A doctor will program the pulse generator using a handheld device. Over the year or two following surgery, your doctor will work closely with your child to adjust the amount of electrical stimulation. This ensures that your child is getting the amount they need when they need it.

What are the benefits of a pediatric deep brain stimulation (DBS)?

While DBS doesn’t cure a movement disorder, it can reduce symptoms in most children. Each child has different needs and responses. You can talk with your doctor about what to expect and what advantages DBS might bring your child.

Doctors can create different settings so that a child or parent can control the stimulation for different activities, such as eating or walking. If the child’s needs evolve over time, the settings can be changed. The device can also be turned off. Two features of DBS that many parents appreciate are the fact that it can be modified to match a person’s needs, and it is reversible.

What are the side effects of a pediatric deep brain stimulation (DBS)?

If the settings are too high, a child may experience discomfort or pain. Your doctor will adjust the DBS settings every month or so, which gives your child’s brain time to adjust to the stimulation. It can take some time 6-24 months for the doctor to find the best settings for your child.

Any operation on the brain can involve some risks. These include bleeding in the brain (hemorrhage) and stroke. The risk of these is very, very low in children, but not zero. There is the possibility of an infection. Most of that risk is during the first few weeks after surgery. There is also the chance that DBS will not be effective. But these problems all are very rare.

What to expect with pediatric deep brain stimulation (DBS)

The surgery consists of two steps:

1. The first step is the surgery to implant the electrodes. The surgeon will drill tiny holes in the skull to place the electrodes.
2. The second step happens a week later. They will place the pulse generator near your child’s collarbone and connect it to the electrodes. All of the parts of the DBS system are under the skin.

A month later, and then monthly for much of a year, the doctor will meet with your child to adjust the settings and find the ones that are most effective.

What to expect before pediatric deep brain stimulation (DBS)

Your child will have neuropsychological testing so that we can better understand their brain function. Your child also will need imaging studies of their brain so that the doctors can plan the surgery.

What to expect during pediatric deep brain stimulation (DBS)

The first operation usually takes four to six hours. Your child will have general anesthesia (deep sedation). They will probably spend two nights in the hospital.

The second surgery is faster (2-3 hours) with lighter sedation, and your child can go home that night.

What to expect after pediatric deep brain stimulation (DBS)

Your child should expect to make gradual changes. We typically start seeing small changes in a child's movement within a week or two after each monthly visit with the neurologist. Over time, as the settings are adjusted, your child should start to have more control over their movements.

At first, your child will need the medications and therapies they were using before DBS. Over time, they may be able to reduce the medications, but that will not happen immediately. If the pulse generator has a rechargeable battery, your child will need to recharge it several times a week. The pulse generator will need to be replaced in five to seven years in an outpatient procedure.

How do I prepare my child for pediatric deep brain stimulation (DBS)?

What is my child allowed to eat and drink before pediatric deep brain stimulation (DBS)?

Your child will have to fast overnight before the surgery.

What are the prep instructions for pediatric deep brain stimulation (DBS)?

You will receive specific instructions from the surgery team.

What available services are offered by Child Life for pediatric deep brain stimulation (DBS)?

Our Child Life staff can help your child set realistic expectations and provide with age-appropriate emotional support on the surgery day. We also can work with siblings to address their concerns, and we can help the whole family prepare for DBS.

What questions should I ask my provider about pediatric deep brain stimulation (DBS)?

• What training and experience do the doctors have?
• How long have the doctors been doing this procedure?
• What kinds of problems have the doctors had with DBS in the past?
• How does the doctor troubleshoot problems that come up with DBS?
• What kinds of improvements should I expect DBS to offer for my child?
• Do I have any control over the DBS when we’re away from the doctor’s office?