A new study found that nearly half of babies who suffer from infantile spasms are not accurately diagnosed for more than a month and this delay can increase the risk of intellectual disability, autism, lifelong epilepsy, and death. A team led by Shaun Hussain MD, MS, director of the University of California Los Angeles Infantile Spasms Program, presented these findings at the American Epilepsy Society 70th Annual Meeting, which coincides with Infantile Spasms Awareness Week.
A form of epilepsy, infantile spasms are also known as West syndrome. Seizures consist of a sudden stiffening of the body, arms, and legs and head bends forward. Each seizure lasts only a second or two, but usually occur in a series and are most common just after waking. Many children with infantile spasms develop other kinds of epilepsy. (Watch examples of infantile spasms.)
“Some of these children can be cured, but successful treatment often depends on prompt diagnosis,” said Hussain. “The delays we observed are simply horrifying and represent a failure of our healthcare system to address a preventable cause of mental retardation.”
- Researchers surveyed the parents of 100 children who suffered from infantile spasms and found only 29 were seen by a healthcare provider who accurately diagnosed them within one week of spasm onset.
- Nearly half waited a month or longer for an accurate diagnosis.
- Several infants were not diagnosed for years.
- Many parents who participated in the study said their concerns often were discounted by pediatricians, emergency department physicians, and neurologists.
- Non-English speaking parents experienced a longer delay in diagnosis, but that barrier explained only a small fraction of the delay.
The Impact of Delayed Diagnosis
- Researchers estimate that due to the delay in diagnosis and treatment, one-third of the children in the study will suffer a 15-point reduction in IQ.
- The infantile spasms often are accompanied by a chaotic brain wave pattern called hypsarrhythmia. The damage of the spasms and chaotic brain wave is cumulative. Often the spasms stop by the time the child is a toddler, but by then the damage is done.
Parents who think their child may be having infantile spasms should see a pediatric neurologist immediately and insist on a video EEG for 24 hours or overnight, which tracks the baby’s brain waves while videotaping the spasms.
Learn more about the outlook for children with infantile spasms and how they are treated here.