Treatments for Sturge-Weber syndrome in Children

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How is Sturge-Weber syndrome treated?

Sturge-Weber is a lifelong condition that can't be cured. However, early diagnosis and treatment of symptoms by a team of specialists can limit and prevent complications and improve your child's quality of life.

  • Seizures – Treatment is mainly directed toward trying to control the frequent seizures. This may be possible with anti-seizure medications. However, in severe cases, the epilepsy is resistant to medical treatment. In these cases, early consideration is given to surgical treatment.
  • Glaucoma – Treatment of the glaucoma may include medications to decrease the amount of fluid in the eye or to help drain fluid from the eye. Surgery to improve fluid flow is considered in more serious cases.

If your child has Sturge-Weber but does not have glaucoma, she should be followed regularly for the development of glaucoma and also amblyopia (also called “lazy eye”).

  • Port wine stains – Port wine stains are commonly treated with pulsed dye laser, a device that is "tuned" to a specific wavelength of light and produces a bright light that is absorbed by blood vessels. The abnormal blood vessels are destroyed without damaging the surrounding skin. Many treatment sessions are often required.
  • Other treatment – Depending on his needs, your child's treatment may also include other Children's departments, including physical therapy for muscle weakness and behavioral and educational therapy for developmental delays.

When is neurosurgery an option?

Neurosurgery is recommended when your child experiences chronic, severe seizures that continue despite pharmacological treatment. The surgery involves removing all or almost all of one side of the brain where the seizures originate.

Is the surgery safe?

We've performed this procedure many times at Children's with excellent outcomes. In many cases, the children are seizure-free and no longer depend on multiple medications. Because a child's brain is "plastic," the remaining portion is able to overtake most of the functions of the missing side. Partial paralysis on the side of the body opposite the removed portion is common. It is important to note that surgery is recommended for only a small subset of patients and is not necessary for most cases of Sturge-Weber syndrome.

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