Infantile Spasms Awareness Week

ISAW 2019
December 1-7, 2019

Epilepsy News From:

Thursday, November 14, 2019

From December 1-7, 2019, a coalition of organizations including the Epilepsy Foundation will mark the fifth 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

“What I would always suggest to families is that if you feel like something is wrong, pay attention. Infantile spasms starts with very subtle signs,” says Amy Brin, executive director and CEO of Child Neurology Foundation. “But pretty significant changes are going on in the brain, with major seizure activity, and can have a devastating impact on a child’s neurological development if left untreated. It’s important that when families recognize that something is wrong, that they act and feel empowered in their relationship with their clinician to come forward with their concerns.”

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 are caused by a condition in a baby's brain and include repetitive, but often subtle movements such as: jerking of the mid-section, dropping of the head, raising of the arms, or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex.
  • While infantile spasms appear as subtle movements, they are still a dangerous form of epilepsy.
  • Often, infantile spasms occur in quick succession — sometimes dozens at a time. A baby can have more than 100 seizures in one day.
  • Worldwide, it is estimated that a baby is diagnosed with infantile spasms every 12 minutes.
  • While rare, IS is a serious condition and can cause long-term damage to a child’s developing brain.
  • IS increases a child’s risk for development delays, lifelong intractable (refractory) epilepsy, autism, and even death.
  • IS occurs in up to 35% of children with Tuberous Sclerosis Complex (TSC). TSC is a genetic disorder that causes tumors to grow in various organs.

Early Identification and Treatment

  • Prompt diagnosis and treatment are critical, but this is challenging because infantile spasms can be mistaken for normal bady movements or other disorders that don't demand urgency. 
  • Pediatricians, emergency care physicians, and family practitioners are often the first to see a baby with infantile spasms. Awareness of IS symptoms and prompt action are critical.
  • Parents and caregivers often report that their concerns are not heard by their providers and infantile spasms are overlooked, but they should feel empowered to pursue more investigation.
  • The earlier a child is diagnosed, the greater the chances that the spasms can be effectively treated.

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.

Raising Awareness

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 #ISAW2019. Follow us on social media to help continue the conversation on identifying and treating infantile spasms early.

Research

The first-ever preventative epilepsy trial in the United States specific to infantile spasms in tuberous sclerosis is recruiting infants.

  • About 80 percent of children with TSC develop epilepsy within the first three years of life, and infantile spasms occur in up to 35 percent of children with TSC. Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, we’ll be able to intervene earlier and prevent infantile spasms or other types of seizures.
  • The study will recruit 80 infants with TSC at 15 sites across the country and aims to determine the impact of preventive treatment with Vigabatrin on the developmental outcomes of children at two years of age.
  • We welcome those interested to contact the Tuberous Sclerosis Alliance at www.tsalliance.org or 800-225-6872.

Other Helpful Resources:

Authored by: Liz Dueweke MPH on 11/2019
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This public service announcement was produced by the Brain Recovery Project for the Infantile Spasms Action Network. Check out www.isweek.org for more information and join the conversation on social media #ISAW2019.

STOP Infantile Spasms
Update Your Profile Photo

Update your profile photo on Facebook to raise awareness for #ISAW2019.

  • Log in to Facebook.com
  • Go to your profile page
  • Hover over your profile photo and select "Update"
  • Select "Add frame"
  • Search for "Child Neurology Foundation"
  • Select "ISAW2019" and select "Use as a Profile Picture" 
  • Let your friends know why you changed your picture!

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