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Currently over 30 national and international organizations strong, ISAN hosts Infantile Spasms Awareness Week every December and created the STOP IS mnemonic—seen by 195 million! Visit Infantilespasms.org to learn more.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 30 national and international entities focused on raising awareness for infantile spasms. Questions about ISAN? Want your organization/company to get involved? Visit Infantilespasms.org. Infantile Spasms AwarenessInfantile 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. Together We Can STOP IS! Although awareness efforts are year-round, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7. During ISAW 2017, the Infantile Spasms Action Network (ISAN) introduced the STOP Infantile Spasms mnemonic. With the mnemonic as the centerpiece for 2017 awareness, we reached over 195 million due to the collective efforts of ISAN. This helpful mnemonic tool – an easily remembered acronym—is STOP Infantile Spasms: 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 Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers. Learn More about IS!Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. Infantile spasms (IS) are seizures, usually occurring in children under age one, which are often overlooked. IS can cause catastrophic, permanent damage to a child’s developing brain.
Know the signs to ‘STOP’ Infantile Spasms. Urgent identification is critical for parents, caregivers and providers. 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.
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.
Research is critical. Research about infantile spasms is gaining momentum. The first-ever preventive epilepsy trial in the United States specific to infantile spasms in tuberous sclerosis complex is recruiting infants.
What Do Infantile Spasms Look Like?VIDEO #1: In this first example, we see an infant with a cluster of individual spasms. Each spasm is less than one second long and heralded by sudden change in behavior with a look of surprise, wide opening of the eyes, brief stare, and elevation/extension of both arms. In between each spasm, the infant appears to be fine. This is very typical of infantile spasms. VIDEO #2: Next, we see a 6 month old boy who similarly exhibits a cluster of spasms. Of particular note, each spasm is characterized by more vigorous extension of the right arm, in comparison to the left. This suggests that the seizures (spasms) originate in the left brain. This was confirmed by neurodiagnostic testing, and this boy underwent a successful hemispherectomy after several medications were unsuccessful. You can read more about his story at evanstauff.com. VIDEO #3: The infant in this video experiences a cluster of spasms that is slightly different. Although each spasm in the cluster is brief, and similarly characterized by a sudden arrest of behavior with extension of both arms, we see that the spasms provoke an emotional reaction with crying—which momentarily stops with each spasm. This is fairly common and many children with infantile spasms have clusters accompanied by crying or fear. In contrast, some children experience unexpected laughter or happiness. The reasons for these emotional phenomena are not entirely clear but suggest that spasms often affect regions the brain responsible for emotion.
VIDEO #4: The next video shows an infant with fairly typical infantile spasms, with a vigorous head drop and simultaneous lifting of both arms. There is no clear asymmetry in the appearance of the spasms. Compare this video with the following VIDEO 5 – the same patient. VIDEO #5: This shows the same infant presented in VIDEO #4. This video was recorded 10 weeks after the first video, following a course of therapy and partial improvement. Notice that the spasms are now “focal” and manifest with a much milder head-drop, and lifting of just the left arm. This suggests that the right brain is the source of the seizures (spasms). This example demonstrates how it is important not to assume that symmetric spasms exclude the possibility of a “focal” source of seizures.
We share this video, produced by the UK Infantile Spasms Trust and developed to raise public awareness of this rare but potentially devastating disease of infants. Find out more at ukinfantilespasmstrust.org New Online Course from American Academy of Pediatrics (AAP) and American College of Emergency Physicians (ACEP) – Infantile Spasms: Early Recognition and TreatmentThis online course is designed to help primary care and emergency physicians recognize and identify the typical signs and symptoms of infantile spasms. It will also review the most effective therapies for infantile spasms. Learning objectives:
Course was developed by the American Academy of Pediatrics and the American College of Emergency Physicians, with practice guidelines from American Academy of Neurology – all members of ISAN. This PediaLink course was supported by the Child Neurology Foundation. Register today. MOC/CME available. $29 for non-AAP members. Patient Assistance Programs for Sabril® and Currently Available Generic VigabatrinDue to challenges reported by patients and providers, ISAN developed an informational table to help patients and health care provider understand currently available patient assistance programs and their requirements for Lundbeck Sabril®, and generic vigabatrin products offered by PAR Pharmaceutical, Amneal and Upsher-Smith as well as a private foundation offering help with co-pays. Additional information available here from our ISAN partner, TS Alliance. Lundbeck Sabril®
Amneal Pharmaceuticals Generic Vigabatrin for Oral Solution
PAR Pharmaceutical Generic Vigabatrin
Upsher-Smith VIGADRONE™
The Assistance Fund
CNF thanks our 2021 partners – Mallinckrodt Pharmaceuticals, Upsher-Smith Laboratories and Zogenix – for their support.Why does it feel like my baby is having spasms in the womb?Fetal Movement in the Second Trimester
Most women won't be aware of, or recognize, the flits and twitches, which can feel a lot like gas or muscle spasms, for at least another few weeks. By the fifth month, most women feel the fidgets and squirms of their active little tenant.
How do I know if my baby is having a spasm?The spasms look like a sudden stiffening of muscles, and the baby's arms, legs, or head may bend forward. The seizures occur in a series of short spasms, about one to two seconds in length. Babies may have as many as 100 spasms a day.
How can you tell if your baby is having a seizure in the womb?Abnormal forceful, jerky, and periodic fetal movement can be associated with a fetal seizure. The seizures occur repeatedly, usually involving the whole fetal body, and at a frequency that varies from two movements/second in clonic convulsions to several times/minute in lightening convulsions (2, 3).
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