Infantile spasms are a medical emergency – let’s help stop them

Infantile Spasm Awareness Week (ISAW) takes place in the first week of December, an important effort to raise awareness of infantile spasms, or IS. Infantile spasms are a very uncommon but extremely dangerous form of seizure – which is why it’s important to know the warning signs.

Often misdiagnosed as colic, reflux, or a startle reflex, infantile spasms are considered a medical emergency. Infantile spasms are characterized by recurrent but frequently undetectable motions such as jerking of the midsection, head dipping, arms rising, or wide-eyed blinks.

What causes infantile spasms?

A article explains that IS may be brought on by issues with how the brain was formed during fetal development, infections, brain trauma, or faulty blood arteries in the brain (such as arteriovenous malformations).

Babies with certain metabolic and genetic problems might also have infantile spasms. Infantile spasms can occasionally be brought on by a vitamin B6 deficiency, as well.

Infantile spasms are associated with an increasing number of gene variants, but the cause is frequently unknown.

The Infantile Spasms Action Network (ISAN) uses the "STOP" mnemonic to help parents recognize early signs of infantile spasm: [S]ee the signs, [T]ake a video, [O]btain diagnosis, and [P]prioritize treatment.
The Infantile Spasms Action Network (ISAN) uses the “STOP” mnemonic to help parents recognize early signs of infantile spasm.

What can we do about IS?

The Infantile Spasms Action Network (ISAN), a coalition of more than 30 international organizations committed to combating IS, says early diagnosis is critically important. However, this can be challenging for parents since infantile spasms might be confused with typical newborn movements or other illnesses that don’t require immediate attention.

According to the National Institute of Neurological Disorders and Stroke (NINDS), IS can be treated using hormonal therapy, like adrenocorticotrophic hormone (ACTH) or prednisolone, or the anti-seizure medication vigabatrin.

NINDS claims that whatever the underlying reason is for the infantile spasms, it will have a significant impact on the prognosis. Children with IS typically have poor academic prognoses since many have neurological problems before their spasms even start. In addition, NINDS says “children with IS are at a higher risk for autism.”

ISAN is the host organization of Infantile Spasm Awareness Week. The organization focuses its efforts throughout the week on highlighting the STOP Infantile Spasms mnemonic:

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

The organization has successfully reached over 195 million people thanks to the mnemonic as the focal point for awareness.

To join the conversation and help raise awareness, download the 2022 ISAW Partner Toolkit.

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