Practice Based Learning: Infantile Spasms and the Google Machine

Zachary Cline-Egri DO





Presented by Zachary Cline-Egri, DO (PGY1)


  • How accurate is Google at diagnosing infantile spasms (IS)?

Infantile Spasms:

  • West Syndrome
    • Triad:
      • Spasms
      • Hypsarrythmia
      • Developmental Delay
  • First identified by William James West
    • Surgeon and apothecary
    • In 1841 letter to Lancet described case of his son
  • Most commonly presents at 4-12 months
  • Less than 10% present after 12 mo
  • Peak: 6 Months
  • 2-3 per 10,000 live births
  • Two types:
    • Symptomatic= Presents with delay and/or clear etiology
    • Cryptogenic= Presents without delay or clear etiology

Diagnosis of IS:

  • FAST
    • General consensus is 1 month or less to initiate treatment
  • Vague
    • Vary from subtle single spasms involving flexion of neck or bowing of head, to full body flexor extensor or mixed myoclonic spasms. Clusters. Multiple times
    • Confusing= benign sleep myoclonus, Sandifer syndrome, moro reflex
  • EEG= hypsarrhythmia
    • High voltage
    • Slow, chaotic background with multifocal spikes
    • On spectrum
    • 1/3 without hypsarrythmia

Examples of IS:

Results (Krag & Holmes, 2016)

  • Google search: “infantile spasms”, “West Syndrome” and “baby having seizure”
  • Reviewed website accuracy in:
    • Age range, spasm description, EEG finding, urgency in diagnosis, etiology, prognosis, treatment options, as form of epilepsy
  • Videos
    • Type of spasm, massive vs. subtle, age of child, present or absence of clusters
    • 156 videos:
      • Easily recognizable spasms: 50%
      • Subtle spasms: 27.5%
      • 26.4% extensor, 32.4% flexor, 41.2% mixed
      • None of the videos showed conditions that were clearly not infantile spasms

Future directions:

  • žCombined therapy
  • žICISS trial
    • —Combined vigabatrin w/ hormonal therapy (ACTH or prednisione)
    • —Significantly more effective at stopping infantile spasms than hormonal therapy alone
    • —Sustained response at 4 weeks
    • —88% response rate in low risk group
    • —Continue to show no formal difference between use of prednisone and ACTH
    • —Developmental results to follow


  • Patient’s parents with concern for infantile spasms after online research should be taken very seriously


Nelson GR. Management of infantile spasms. Transl Pediatr. 2015 Oct;4(4):260-70.

Krag A, Holmes GL. Diagnosing infantile spasms: Accuracy of the internet. Epilepsy Behav. 2016 Nov;64(Pt A):239-241.

O’Callaghan FJ, et al. Safety and effectiveness of hormonal treatment versus hormonal treatment with vigabatrin for infantile spasms (ICISS): a randomised, multicentre, open-label trial. Lancet Neurol. 2017 Jan;16(1):33-42.

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