Infantile spasms is a rare but serious form of epilepsy affecting about 10,000 children nationwide, which, if not properly treated, can lead to intellectual disabilities.
“The single biggest challenge we face with infantile spasms is that most people have never heard of it,” says Shaun A. Hussain, MD, director of the UCLA Infantile Spasms Program. “Diagnosis is often very delayed, and this delay reduces the likelihood that a patient will respond to treatment.”
The condition, also called West Syndrome, is a type of epilepsy that typically affects infants under the age of 2. It is characterized by clusters of peculiar seizures that can include lifting and extension of the arms and bending forward at the waist, with a sudden and forceful drop of the head. Each cluster can last a few minutes, and most often occur upon awakening, but can happen at any time of the day.
Nonsurgical treatment can include hormone therapies. About 10 percent of children with infantile spasms are candidates for surgery, including a dramatic procedure called hemispherectomy, a surgery to remove or disable one-half of the brain to stop the seizures.
More treatment advances are needed, Dr. Hussain says. UCLA is a referral center for infantile spasms cases, and it has an active research program to explore improved treatments as well as to further greater understanding of the condition.
“There has been quite a bit of fine-tuning of existing therapies, but it has been more than a generation since we’ve seen a new and effective therapy for infantile spasms,” Dr. Hussain says. “We are searching for safe and effective therapies.”
