Sturge-Weber Syndrome, Pediatric
Sturge-Weber syndrome is also known as encephalotrigeminal angiomatosis. It is a condition that your child is born with (congenital). Sturge-Weber syndrome affects your child’s nervous system and may cause glaucoma. Glaucoma occurs when there is too much pressure in your child’s eye or eyes due to fluid.
CAUSES
Sturge-Weber syndrome is caused by genetics.
SIGNS AND SYMPTOMS
The most visible symptom is being born with a birthmark on the face that ranges from dark purple to light pink in color. This birthmark is known as a port-wine stain. Not all children with Sturge-Weber syndrome are born with this birthmark, though.
Other symptoms may include:
• Developmental delays.
• Seizures.
• Muscle weakness.
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• Imaging of the brain using X-rays, CT scans, and MRIs.
• Electroencephalogram (EEG). This records your child's brain's electrical activity.
• Developmental testing.
TREATMENT
There is no cure for Sturge-Weber syndrome. Treatment is directed at relieving symptoms. Treatment may include:
• Medicines to control seizures. Surgery may be needed if medicines do not work.
• Medicines for glaucoma. Surgery may be needed if medicines do not work.
• Physical therapy for muscle weakness.
• Educational support for developmental delays or learning disabilities.
Laser treatment may also be done to help remove or lighten the port-wine stain.
HOME CARE INSTRUCTIONS
• Give medicines only as directed by your child’s health care provider.
• Keep all follow-up visits as directed by your child’s health care providers. This is important.
• Work closely with your child’s teachers and school system.
• Talk to your child. Make sure he or she is not embarrassed of or being bullied due to his or her birthmark.
SEEK MEDICAL CARE IF:
• Your child’s seizures change or become more frequent.
• Your child’s vision changes.
• Your child has muscle weakness or