From December 1-7, 2020, a coalition of organizations including the Epilepsy Foundation will mark the sixth annual Infantile Spasms Awareness Week (ISAW). The goal of ISAW is to:
- Increase awareness and understanding of infantile spasms through the distribution of educational materials to providers, caregivers, and the public
- Announce new and useful research and support initiatives
- Declare that help is available, and hope exists
- Promote early diagnosis and treatment
If you feel like something is wrong, pay attention.
About Infantile Spasms
Infantile spasms are a rare, but very serious type of seizure.
- Infantile spasms (IS) are a rare, but serious type of seizure, occuring in 1 in 2,000 children. IS can cause catastrophic, permanent damage to a child's developing brain.
- The seizures include repetitive, but often subtle movements. These movements include jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks.
- Each event lasts 1-2 seconds, but these cluster together, occuring every few seconds for periods of several minutes.
- The onset of IS peaks between 4 and 6 months, although these seizures can begin anytime in the first two years.
- While infantile spasms appear as subtle movements, they are still a dangerous form of epilepsy.
- Infantile spasms are often overlooked or misdiagnosed for other conditions, including colic, reflux, or startle reflex.
Worldwide, it is estimated that a baby is diagnosed with infantile spasms every 12 minutes.
Early Identification and Treatment
- As we continue to navigate the COVID-19 pandemic, it's critical to remember infantile spasms are still medical emergencies that need urgent care.
- Any delay in seeking emergency treatment can increase your child's risk for brain damage.
- Soon after spasms begin, the child may stop making developmental progress or even lose skills they previously acquired, causing significant cognitive disabilities if left untreated.
- The earlier a child is diagnosed, the greater the chances that the spasms can be effectively treated.
- If caregivers believe their concerns are being overlooked, they should seek out a second opinion from a TSC clilnic, a Comprehensive Pediatric Epilepsy Center, or neurologist experienced in treating IS.
The mnemonic STOP is a helpful tool for responding to IS:
- See the signs: Infantile spasms are characterized by repetitive but often subtle movements. These movements occur in clusters and include jerking of the mid-section, raising of the arms, or wide-eyed blinking.
- Take a video: Recording how your child is behaving during the suspected spasms can help your healthcare provider with a possible diagnosis.
- Obtain diagnosis: Visit a child neurologist or epileptologist to confirm IS. Bring your video and any other information about the development of the spasms. Your healthcare provider will perform a physical and neurological exam as well as an EEG (electroencephalogram) to look for a specific brain pattern called a hypsarrhythmia (HIP-sa-RITH-me-ah).
- Prioritize treatment: Ending the spasms can help minimize any developmental delays.
For Health Care Providers
- This Infantile Spasms Awareness Week (ISAW), health care providers are reminded not to overlook the emergency of infantile spasms. The earlier a child is diagnosed, the greater the chance that the spasms can be effectively treated.
- The Child Neurology Society has a brief, practical document on the diagnosis and treatment of IS during the COVID-19 pandemic.
- Research shows that be identifying abnormal brain activity prior to the onset of seizures, health care providers will be able to intervene earlier and prevent infantile spasms or other types of seizures.
- Clinicians should instruct parents to obtain and share video recordings of several typical events for review before seeing the patient.
- Providers should help balance parents' concerns around contracting COVID-19 in a hospital setting. Remind patients that anything that would be an emergency in the past, is an emergency now.
Help spread awareness for IS and the importance of early treatment by sharing the STOP graphic and animated video and posting on social media with the hashtag #ISAW2020. Follow us on social media to help continue the conversation on identifying and treating infantile spasms early.
Other Helpful Resources: