Infantile Spasms/Seizure Medication Access Survey

Have you ever had problems getting medications for Infantile Spasms or Seizures?

Please let us know about any problems you may have had getting medication for Infantile Spasms or Seizures. Have you had difficulties paying for a medication or has the medication not been available when you needed it? Take the survey and tell us about your experiences.

See Survey Responses

Seizure Tracker^® web and mobile tools to can help you track your medication schedule. The daily notes and contact manager tools can be used to record and reference any problems you may be having accessing your medication. See these resources and more in the Seizure Tracker help section.

Visit the Seizure Tracker^® help section here.

With your help, we will continue to improve upon the data evaluation tools on Seizure Tracker^®. Please feel free to email us any input you may have.

Why focus on Infantile Spasms?
Infantile Spasms(IS) are a catastrophic form of epilepsy. One of the most effective medications for treating IS is Vigabatrin or Sabril ® (brand name), which recently came available as a generic in the United States. Member organizations of the Infantile Spasm Action Network (ISAN) have been hearing from families they serve that there have been recent challenges with insurance coverage and the distribution of Vigabatrin. As this and other medications become available as generics it is important to understand the impact on families struggling with seizure management. Please take the survey if you have had problems acquiring seizure medication or pass it along to someone you know who has experience difficulty.

Other helpful links:

Infantile Spasms Information at CNF

Tuberous Sclerosis Alliance Resources

Epilepsy Foundation Vigabatrin and Onfi drug alert

Infantile Spasms: What Parents Need to Know

Diagnosis and Management of Infantile Spasms

Report break through seizures due to changing medication manufacturers (or brand to generic) to the FDA