What are Infantile Spasms (IS)?

 

Infantile Spasms

Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. 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.

Prompt diagnosis and treatment are critical, but this is challenging because infantile spasms can be mistaken for normal baby movements or other disorders that don’t demand urgency.

Infantile spasms is a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Infantile spasms is characterized by subtle seizures which can have large neurological effects, potentially leading to developmental delays and cognitive and physical deterioration.

Sadly, many primary care doctors and parents alike are not familiar with the signs and symptoms of infantile spasms. So, many children with infantile spasms do not receive treatment during the critical window within the weeks and months after the emergence of symptoms.

That’s why it’s critical for everyone to know the signs to STOP Infantile Spasms.

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We’re raising awareness about Infantile Spasms in hopes of a brighter future. Awareness leads to opportunity!

Each year, Infantile Spasms Awareness Week (ISAW) provides a unique opportunity to discuss disease awareness within the child neurology field.

  • Held December 1-7, Infantile Spasms Awareness Week helps parents, as well as physicians and other health care providers, know about this disease and treatments.
  • To join the conversation on Twitter, use the hashtag #ISAW2021. Together we can STOP IS!

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Infantile Spasms Action Network

In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during ISAW. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness. Today, this group has grown into a collaborative network of 32 national and international entities focused on raising awareness for infantile spasms.

Questions about ISAN? Want your organization/company to get involved?

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