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.

Time Stamp

Description

Key Information

00:00:43

Critical Advice: Surgery Consult vs. Surgery

Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis.

00:01:54

Bennett’s Diagnosis and Surgery

Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy.

00:04:50

The Early Months: Colic vs. Seizures

Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician.

00:12:08

Emergency EEG & Stroke Discovery

The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere.

00:14:50

Infantile Spasms: Recognize the Signs

Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters.

00:17:10

Advocacy: How to Get Help

Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist.

00:22:15

The Surgical Seed is Planted

Bennett’s first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a “seed” for future research.

00:24:09

Choosing Surgery and the “Elmo Song” Miracle

The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having.

00:30:52

Defining Drug-Resistant Epilepsy (DRE)

DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

00:42:55

Final Message: Trust Yourself

Audrey’s final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey.

Support the Host & Show

If you found value in this conversation, please check out host Katie Taylor’s work and community resources:

• Join Katie Taylor’s Substack for in-depth insights and articles: Join here

• Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

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