Brain Surgery for Drug-Resistant Epilepsy: Managing Infantile Spasms

Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms.

Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke.

This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery.

Key Takeaways and Actionable Advice

• Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is.

• Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring.

• Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning.

• The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case.

• Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

• Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices.

Guest Information & Resources

• Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance.

• Organization: Pediatric Epilepsy Surgery Alliance

• Website: epilepsysurgeryalliance.org.

• Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more.

• Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms.

 

 

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