Infantile Spasms Awareness Week (ISAW)
This Infantile Spasms Awareness Week (ISAW), healthcare providers are reminded they are on the front lines for combatting this condition.
They control the speed in which infantile spasms are detected – an important factor in how effectively they can be treated.
Infantile spasms can be difficult to spot. PCPs must understand the “red flag” words alerting to the possibility of infantile spasms when caregivers are describing symptoms, including small crunches, head drops, head bobs, and uncontrolled movements.
Neurologists must begin treatment within the first seven days of an infantile spasms diagnosis to have the best chance to prevent long-lasting symptoms. Physicians should maintain a low threshold of suspicion when considering if a child could have infantile spasms.
If you suspect infantile spasms, refer the child to an urgent visit in front of a neurologist and order an EEG immediately. Do not hesitate to refer to a neurologist, even if you are unsure of a definitive diagnosis.
The faster a child is diagnosed and treated for infantile spasms, the less the potential for long-term neurological effects.
See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
Take a video: Record the symptoms and talk to your doctor immediately.
Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
Prioritize treatment: End spasms to minimize developmental delays
We’re raising awareness about Infantile Spasms in hopes of a brighter future. Awareness leads to opportunity!
ISAN looks forward to more engaging awareness efforts this year! Help us spread the word! The messaging below can be shared on social media or in other partner communication networks. Please use this site ISweek.org and #ISAW2021.
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Download the 2022 ISAW Partner Toolkit
- The following key messages should provide the foundation for any ISAW outreach and
offer guidance on how to communicate about the awareness week.
- The following key messages should provide the foundation for any ISAW outreach and
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.
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