Face IS (FACEIS) was founded by Emily Kather in 2010. Emily's son, Ben, was diagnosed with infantile spasms (IS) in August of 2009. Like many parents who've faced IS, Emily encountered many hurdles in the pursuit of finding reliable, expert information and care surrounding her son's condition.

Out of her, FACEIS was born.

To deliver the expert, vetted information and resources that parents and medical...

Infantile Spasms is a neurologic emergency that typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters. Please click on this link to view a short video about infantile spasms and what it looks like.

It is quite common for infantile spasms, which is a very rare form of epilepsy, to be overlooked or misdiagnosed, delaying the proper evaluation and early treatment.

While infantile spasms is a rare form of epilepsy, it can be identified by its distinct (unique) characteristics if physicians and caregivers are aware of the telltale signs. Infantile spasms can be mistaken for colic or an exaggerated Moro reflex, but these do not typically occur in the clusters that are typical of IS. Infantile spasms is typically diagnosed by observing spasms in an infant who also displays hypsarrhythmic EEGs.

Patients with spasms will present in a variety of ways, but the most typical is a recognition of little flexion jerks that can be mistaken for a little startle reflex in children...

FDA Approved Treatment Options

Acthar

ACTH (Acthar) is a prescription medication that may work by helping the body produce natural hormones such as cortisol and by having a direct effect on the brain. It is in gel form and is given as an injection into the muscle. The gel is designed to slowly release the medication into the body after it is injected.

Acthar is typically used to treat infantile spasms in infants and babies....