Infantile Spasms Awareness Week December 1-7 Helps Spread the Word About Rare Seizure Disorder in Young Children

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By Molli Salzman, Mallinckrodt employee and mother of a child with infantile spasms

When my son Charlie was a baby, I had a nagging feeling something wasn’t quite right. At the time, Charlie had two older brothers close in age, so I was familiar with what developmental milestones should look like. I talked to our pediatrician, who assured me everything was okay. However, I was not convinced. Our pediatrician referred Charlie to a pediatric neurologist, and Charlie was diagnosed with infantile spasms, a rare seizure disorder in young children.

Infantile spasms, sometimes called West syndrome, is a rare seizure disorder that occurs in approximately 2,000 to 2,500 infants per year in the U.S., based on a review of population-based studies of the condition.[1]  It most commonly occurs between four and eight months of age.[2] The condition can be difficult to diagnose because symptoms are often subtle and resemble other disorders, but recognition is critical. Without care, infantile spasms can increase a child’s risk for long-term problems, including developmental delays and epilepsy.[3]

Infantile Spasms Awareness Week 2017, December 1-7, helps raise awareness of infantile spasms through education, research grants and other initiatives aimed at health care providers, parents and caregivers. This awareness week is in conjunction with the Child Neurology Foundation and Tuberous Sclerosis Alliance. As in previous years, Mallinckrodt continues to support this initiative and will recognize Infantile Spasms Awareness Week in 2017.

For parents, it’s critical to trust your instincts. If you feel something isn’t right, ask questions, seek answers and advocate for your child. Don’t stop seeking information and answers until your concerns are addressed because early detection is so important. Help is available. Efforts like Infantile Spasms Awareness Week help spread the word so parents can act promptly on behalf of their children.

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[1] Wheless J, Gibson P, Rosbeck K, et al. Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents. BMC Pediatrics. 2012;12(1):108. doi:10.1186/1471-2431-12-108. Accessed August 28, 2017.

[2] Hrachovy R. West’s syndrome (infantile spasm). Clinical description and diagnosis. Adv Exp Med Biol. 2002;497:33-50.

[3] Lagae L, Verhelst H, Ceulemans B, De Meirleir L, et al. Treatment and long term outcome in West syndrome: the clinical reality. A multicentre follow up study. Seizure 2010;19(3):159-164.