What is Subacute Sclerosing Panencephalitis (SSPE)

Subacute sclerosing panencephalitis (SSPE) is a rare brain condition that develops years after a measles infection. It usually starts before age 20 and gets worse over time. SSPE causes brain swelling (encephalitis) and a loss of the protective covering that surrounds nerves (demyelination).

SSPE leads to a gradual loss of mental and physical abilities.

What are the causes?

This condition is caused by the measles virus.

What increases the risk?

This condition is more likely to develop in:

• Children who did not get the measles vaccine.
• Children who had measles before age 2.
• Males.

What are the signs or symptoms?

Symptoms start slowly and gradually get worse. Early symptoms may include:

• Memory and behavior changes.
• Irritability.
• Short attention span.
• Sleeplessness.
• Uncontrolled jerking of muscles (spasms).

Late symptoms may include:

• Seeing or hearing things that are not there (hallucinations).
• Uncontrolled stiffening, twitching, or jerking of the body (seizures).
• Difficulty swallowing.
• Blindness.
• Extended loss of consciousness (coma).

How is this diagnosed?

This condition may be diagnosed based on:

• Your child’s medical history.
• Your child’s symptoms.
• A physical exam.
• Tests that may include:
  • Brain imaging tests, such as a CT scan or MRI.
  • An electrical study of brain waves (electroencephalogram, or EEG).
  • Testing the fluid around the brain and spinal cord (lumbar puncture).
  • Blood tests.

How is this treated?

There is no cure for this condition. Treatment helps to slow down the disease and manage symptoms. A team of specialists will work with you to develop the best treatment plan for your child. Treatment may include:

• Medicines to prevent or control seizures.
• Experimental treatments with certain medicines.

Follow these instructions at home:

In case of a seizure:

Learn and teach friends and family what to do if your child has a seizure. You and they should:

• Lay your child on the ground to prevent a fall.
• Put a cushion under your child’s head.
• Loosen any tight clothing around your child’s neck.
• Turn your child on his or her side. If vomiting occurs, this helps keep the airway clear.
• Stay with your child until he or she recovers.
• Not hold your child down. Holding your child down will not stop the seizure.
• Not put anything in the child’s mouth.
• Know whether or not the child needs emergency care.

General instructions

• Work with your child’s team of health care providers.
• Give over-the-counter and prescription medicines only as told by your child’s health care provider.
• Ask the health care provider which activities are safe for your child.
• Keep all follow-up visits as told by your child’s health care provider. This is important.

Contact a health care provider if your child:

• Has symptoms that change or get worse.
• Needs help doing everyday activities at home.
• Has difficulty swallowing.

Get help right away if:

• Your child has difficulty breathing.
• Your child loses consciousness.
• Your child has a seizure for the first time.
• Your child loses his or her vision.
• You are no longer able to care for your child safely at home.

Summary

• Subacute sclerosing panencephalitis (SSPE) is a rare brain condition that develops years after a measles infection.
• It usually starts before age 20 and gets worse over time.
• SSPE causes brain swelling (encephalitis) and a loss of the protective covering that surrounds nerves (demyelination).
• There is no cure for this condition. Treatment helps to relieve symptoms and slow down the disease.