Infantile Spasms Awareness Week

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December 1-7, 2018
Monday, November 19, 2018

Infantile Spasms Awareness Week (ISAW), held during the first week of December, helps parents, physicians, and other healthcare providers learn more about infantile spasms (IS) and its treatments. ISAW is co-led by the Child Neurology Foundation and Tuberous Sclerosis Alliance (TS Alliance). ISAW aims to raise awareness for the condition as well as promote early diagnosis and treatment.

About Infantile Spasms

  • 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

  • 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 posting on social media with the hashtag #ISAW2018. Follow us on social media to help continue the conversation on identifying and treating infantile spasms early.

Other Helpful Resources:

Authored by: Liz Dueweke MPH on 11/2018
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When treated correctly and quickly, a child’s brain has more time to recover and gain developmental ground that may have been lost while spasms occurred. Check out www.isweek.org for more information and join the conversation on social media #ISAW2018.

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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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