Infantile Spasms (IS) is rare, affecting fewer than 2500 patients each year in the US, most in the first year of life; however, it's a catastrophic condition for which there is a need to identify, diagnose, and treat early.4 The condition has both cryptogenic (idiopathic) and symptomatic etiologies6-8:

  • 30% to 40% of cases are cryptogenic (underlying cause cannot be detected)
  • 60% to 70% of cases are symptomatic (cause is detectable)

Identifying IS

Parents and caregivers are usually the first to recognize the physical signs of IS. However, they may not have the words or terminology to describe their observations and the symptoms may appear subtle and similar to colic, gastroesophageal reflux disease (GERD), or normal baby movements, so IS may be misdiagnosed.4,6

When describing their baby's behavior, caregivers might use words like4-6,9,10:

  • Weird spells
  • Head bobbing/head drops
  • Jerking/leg jerks
  • Crunching episodes/body crunching
  • Eye rolls
  • Wide-eyed stares
  • Doesn’t make or keep eye contact
  • Fearful crying and then being OK
  • Was smiling frequently but has stopped
  • Has lost skills he or she had gained

If you or your office staff hear these descriptions, consider IS and schedule a visit. In the meantime, if you or a baby's parent or caregiver suspects IS, ask the parent or caregiver to videotape the suspicious movements over the next day or 2, or before they come to see you. Spasms occur most frequently in the morning or upon waking from a nap.7 They may last from less than few seconds to up to 10 seconds, and in clusters of 2 to 100 at a time.6

IS can be subtle, but you can save precious time and treat fast if you recognize the signs5-7:

  • Onset usually within the first year of life
  • Clusters of myoclonic and tonic seizures
  • Hypsarrhythmic electroencephalogram (EEG) pattern
  • Delayed development

Learn more about hypsarrhythmia

Helpful Resources

Take the guesswork out of dosing Acthar Gel for IS

From per-injection volume to number of vials, our calculator simplifies the process.

Acthar Referral Form

Download, complete, and fax the Referral Form to order Acthar Gel for your appropriate patients.

Reimbursement support and financial assistance

Patients can get individualized support from Case Managers at the Acthar Patient Support Team, including help during the insurance approval process and finding financial assistance options.