A Nurse’s Knowledge & A Mother’s Love Leads to Son’s Life-Changing Brain Surgery

This month on Seizing Life® a nurse and mother shares her young son’s journey from the onset of focal seizures to a devastating diagnosis of Rasmussen’s Encephalitis to a life-changing brain surgery.

Epilepsy is a complicated and often misunderstood condition. Even neurologists and epileptologists must admit that we do not yet fully understand all the complexities of epilepsy. So, how do you as a parent navigate a medical landscape populated by overworked neurologists, numerous tests, ever-changing medications, frequent seizures, and the emotional toll that accompanies all of these challenges? In this episode, Jamiliah Doyle shares her epilepsy journey with her son RJ who first experienced seizures at the age of 4. Following months of changing and stacking medications that weren’t working for RJ, Jamilah sought a second opinion that quickly resulted in seizure-freedom for her son. Unfortunately after seven months, RJ’s seizures returned. Jamilah also began to notice behavioral and cognitive changes in her son. A new CT scan resulted in a devastating diagnosis of Rasmussen’s Encephalitis, a rare, degenerative neurological condition. Recovering from the emotional shock of this diagnosis, Jamilah leaned into her experience as a nurse practitioner and began researching treatment options and outcomes for her son. She decided upon a hemispherectomy, a brain surgery that has provided RJ with the opportunity to live a normal life. Jamilah details her journey with RJ and shares how her nursing background helped her navigate issues and challenges with medical staff, providers, and insurance companies. She explains how she found the right neurosurgeon to perform the operation on her son, talks about the importance of finding a supportive community, and offers her advice to parents who are on similar epilepsy journeys with their children.

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