Infantile Spasms: Rare yet Devastating

December 1st – December 7th is Infantile Spasms Awareness Week and medical professionals are calling on parents and caregivers to take action with four easy steps.

Reports detail a very serious and difficult to diagnosis condition called infantile spasms. Officials define this condition as being a series of subtle seizures occurring in children, most often under the age of one.

Experts note that while rare, they can cause long-term damage to a child’s developing brain.

New research is setting out to identify abnormal brain activity prior to the onset of seizures that may help prevent IS or other types of seizures.

Key facts about Infantile Spasms include:

  • IS involve repetitive, but often subtle movements-such as a jerking of the mid-section, raising of the arms or wide-eyed blinks.
  • About 1,200 children in the United States are diagnosed with IS each year.
  • Most pediatricians will only encounter two IS cases throughout all their years of medical practice.
  • IS are frequently misdiagnosed and written off as minor-such as colic, acid reflux, or even a surprise reflex.
  • IS occur in an estimated 40 percent of children with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to form in various organs and the leading genetic cause of both epilepsy and autism.

Experts are encouraging parents and caregivers to keep our steps in mind to help in recognizing the condition and acting.

‘S.T.O.P’

  • See the signs
  • Take a video
  • Obtain diagnosis
  • Prioritize treatment

Officials explain the earlier a child is diagnosed and treated, the greater chances the spasms can be stopped.

Organizers note Infantile Spasms Awareness Week (ISAW) provides a unique opportunity to raise awareness and help parents, as well as physicians and other healthcare providers, know about the disease and treatments.

Throughout the campaign, neurology groups are working to recruit participants for a trial currently underway to study tuberous sclerosis complex.

For more information about the symptoms of infantile spasms and treatments available, visit www.isweek.org and follow the conversation using the hashtag #ISAW2017.

Michaela Madison Reporting

 

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