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HOUSTON -- Babies with infantile spasms often go undiagnosed and untreated for weeks, researchers reported here.

In a survey of parents of 100 children with the condition, only 29% were seen by an effective provider -- one who offered a commonly used treatment such as ACTH, corticosteroids, or vigabatrin -- within a week of onset, reported , of the University of California Los Angeles (UCLA), and colleagues at the American Epilepsy Society meeting.

The median time from spasm onset to seeing an effective provider was 24.5 days -- three times longer than the target of 1 week, they added.

"Parents often reported that when they said something was wrong, they were dismissed," said study co-author Jason Lay, also at UCLA. "Spasms are often very subtle movements, like the , or a head drop of less than a second. Pediatricians and neurologists can easily miss this."

"If they're not treated within that window [of 1 week], we can see more serious consequences, which is why we want to reduce the timeline to getting care quickly and effectively," Lay added.

Infantile spasms are rare, occurring in one in 2,500 infants. Physicians -- even neurologists -- often misdiagnose them as normal baby movements, colic, or gastroesophageal reflux disease, the researchers said. But it's estimated that treatment delays can cause a third of these patients to suffer a 15-point reduction in IQ.

The condition can only be diagnosed via an EEG, Lay said.

In the Assessment of Symptoms and Specialists in Infantile Spasms Treatment (ASSIST) Trial, the researchers also found that nearly half waited a month or longer to get the proper diagnosis.

Two factors significantly predicted the time to finding an effective provider: not having English as the primary language (HR 0.37, 95% CI 0.20-0.68, P=0.002), and whether the first neurologist was knowledgeable at treating infantile spasms, which was based on parents' reported perceptions (HR 1.87, 95% CI 1.10-3.19, P=0.02).

"If you do not speak English as your primary language, the more likely you are to face delay in primary treatment," Lay said. "Inversely, if the neurologist was knowledgeable in treating infantile spasms, you were less likely to face delay."

He added that neither insurance status nor annual income predicted time to treatment. "We thought that would have an effect in terms of delayed treatment, but it didn't protect parents and children from getting the proper care sooner than later."

Lay explained that some parents said they were told by relatives that the movements were normal and would likely pass.

"The reality is, they signify something much worse if they're not treated sooner," he said. "These are very preventable if you treat patients right away with the proper medications."

Consequences of not treating these patients include reductions in IQ and transitioning to a more serious form of epilepsy such as Lennox-Gastaut, Lay said.

"Pediatricians are bombarded by questions from concerned parents and are just trying to reassure them, but in this case, that can be catastrophic," Hussain said in a statement. "Our goal is to eliminate all barriers to care and give these vulnerable infants the best possible chance of a good outcome."

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