Living With West Syndrome

West syndrome (also called infantile spasms) should go away by the time your child is 4 years old. But most people who had it will get another kind of epilepsy or seizure condition in childhood or as an adult. About 1 in 5 will have Lennox-Gastaut syndrome, a severe form of epilepsy with multiple types of seizures.

West syndrome can affect your child’s development and ability to think. How severe her problems are depends on what caused the condition and how she was developing before she got it:

  • If she was on track before, she may keep her mental ability or only have a mild disability.
  • If her West syndrome came from a brain disorder or an injury, she’s likely to have more serious problems.

About 7 in 10 babies with West syndrome have severe mental disabilities. She might get autism, especially if the syndrome came from tuberous sclerosis complex, a condition that causes noncancerous tumors in the body and brain. Or she could be hyperactive, which means it’ll be hard for her to sit still or concentrate.

It’s rare, but some children who had West syndrome as babies will die before adulthood. It usually happens before the age of 10.

Your baby is more likely to develop normally if:

  • She was at least 4 months old before she got West syndrome.
  • Her seizures aren’t unusual for West syndrome.
  • She doesn’t have partial seizures.
  • Her readings from an EEG -- which measures electrical activity in the brain -- are normal (she doesn’t have what doctors call asymmetry).
  • She gets treated soon after her diagnosis.
  • Treatment gets her seizures under control quickly.

What to Expect From Treatment

The main goal is to control seizures or lower the number of them. It can also help her development. The earlier West syndrome is treated, the better your child’s chances will be to develop normally or have only a mild disability.

In the Long Run

The future depends on what caused your baby’s West syndrome. If it's from an injury, infection, or a condition like tuberous sclerosis complex, she may not fare as well. 

If there wasn’t another cause and her development was on track before it, her chances of a normal life are a little bit better than 50-50. The odds are even higher if she gets treatment within a month of getting West syndrome. About 1 in 4 babies who have it will develop normally and be able to have a job when they grow up.

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How to Get Support

Parents of children with West syndrome can find -- or give -- help via the Infantile Spasms Project, an online forum run by the David Geffen School of Medicine at the University of California, Los Angeles.

WebMD Medical Reference Reviewed by Hansa D. Bhargava, MD on May 15, 2018

Sources

SOURCES:

Epilepsy Foundation: “Infantile Spasms (West’s Syndrome) and Tuberous Sclerosis Complex,” “Lennox-Gastaut Syndrome (LGS).”

Medscape: “Infantile Spasm (West Syndrome).”

Translational Pediatrics: “Management of infantile spasms.”

National Institutes of Health Genetics Home Reference: “tuberous sclerosis complex.”

Cedars-Sinai: “West Syndrome.”

Infantile Spasms Project: “Support.”

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