Intractable Seizures: Sarah Refuses to Let Rasmussen’s Encephalitis Break Her Spirit
“There are some great resources here that I never knew about.”
Sarah enjoys a warm fall afternoon outside with her puppy Miley.
At age 6, Sarah Alward experienced her first seizure. Once the seizures started, they wouldn’t stop. She was diagnosed at Cincinnati Children’s with a rare disease called Rasmussen’s encephalitis. Medications didn’t stop the seizures, so Sarah underwent a hemispherectomy to disconnect the right side of her brain from the left. As a result, she struggles with some paralysis on the right side of her body, but she is already back to pee-wee cheerleading and dribbling a soccer ball.
On February 10, 2008, Joe Alward checked in on his sleeping 6-year-old daughter Sarah and he noticed her face twitching. The next day, Joe and his wife Kim witnessed Sarah in the midst of what they thought might be a seizure. Prior to that, Sarah had always been healthy. No one else in the family suffers from seizures. That first episode led to a spiral of unending seizures that would challenge Sarah’s family and doctors for the next several months.
Joe and Kim took Sarah to Cincinnati Children’s, home to one of the largest pediatric epilepsy centers in the world. The team approach in the Comprehensive Epilepsy Program at Cincinnati Children’s ensures that patients receive an individualized treatment plan to help children achieve the best quality of life. The goal is to have patients experience no seizures and minimized side effects from therapy. Treatments range from standard antiseizure medications, drug studies, ketogenic diet, epilepsy surgery and vagus nerve stimulator (VNS) implantation.
Searching for a Cause
Family Resources
- What to expect when visiting the Comprehensive Epilepsy Program team at Cincinnati Children’s
- Epilepsy glossary with definitions of words you may hear during your child’s evaluation
To find the cause of Sarah’s seizures, she went through a string of tests including an MRI that showed an abnormality in her brain. CT scans, PET scans, more MRIs, EEGs and spinal taps followed. Sarah was admitted to the hospital more than once, sometimes for days or weeks at a time, as multiple specialists evaluated her condition which was progressively worsening. Standard antiseizure medications weren’t working.
Sarah’s care team and her parents together decided the next step would be for Sarah to undergo a procedure to map where the seizures were coming from. This involved opening her skull and putting a “grid” on her brain. At the same time, Sarah’s neurosurgeon, Francesco Mangano, DO, removed the area of the brain that was causing Sarah’s “continuous seizures,” small partial seizures that occur in different areas of the body and don’t stop.
“Sarah was run ragged,” Joe recalls. But, her dad says, she’s a hard worker. Proving that statement true, she came through that first procedure with few side effects and recovered well from it.
Finally, a Diagnosis
Pathologists then analyzed the part of Sarah’s brain that was removed during the procedure. At last, all other causes were ruled out leaving Sarah with a diagnosis of Rasmussen’s encephalitis, a chronic inflammatory disease usually affecting just one side of the brain. The most effective treatment is a hemispherectomy where the two hemispheres of the brain are disconnected from one another, so that the seizures cannot travel between the two hemispheres.
“Imagine a doctor telling you that is what they want to do to your child and you can imagine what we were feeling at that moment,” Joe wrote on a blog he used to update family and friends of Sarah’s condition. But they had several weeks in between diagnosis and the surgery, and Sarah’s health continued to decline. Joe admits when the time finally came for the surgery, he and Kim were ready for Sarah to experience relief from the seizures that were wearing her down daily.
An All-Day Wait
A hemispherectomy is an intensive surgery typically lasting about six hours. Dr. Mangano had performed five of them in the year before Sarah’s. Her experience began early in the morning, starting with her first tooth falling out in the hospital. (The nurses made sure the tooth fairy knew where to visit!) Around 9:30 pm the Alwards finally got to see Sarah, who had done well during surgery. After just two days in the intensive care unit, she began a rigorous schedule of physical, occupational and speech therapy while recovering in the hospital. A playful and affectionate girl who jumps into everything, Sarah jumped right into her recovery and surpassed everyone’s expectations, casting aside her cane before even being released from the hospital.
A little more than a month after her surgery, Sarah came home to her parents, brother Logan, 9, sister Ava, 2, dog Bailey, and new puppy Miley. Paralysis on the right side of her body limits her somewhat, but she walks on her own with a brace on her right leg, she’s back in school, and she is learning how to write with her left hand. The Alwards were told she might not have been able to talk again after the surgery, but Sarah said, “I love you, Mom,” less than 24 hours later. Her cognitive development has been affected as well, though the Alwards aren’t sure how much. “She has times when she knows what she wants to say but can’t get it out,” Joe says. “And she gets frustrated when she can’t do certain things. But she’s taking it in stride. She gets a lot of attention and she has a lot of support.”
Not Over Yet
Sarah struggles with paralysis on the right side of her body, but she hasn't let that stop her from cheerleading.
For four months after surgery, Sarah had been relatively seizure free which was exactly what her physicians and family were hoping for. But one morning in early November, Sarah had a seizure at school. She continues to undergo evaluation and treatment at Cincinnati Children’s. The Alwards remind themselves that she is just a few months out from undergoing major brain surgery and she is still recovering. It could be just part of the healing of her brain. Undaunted, Sarah continues to show the vim and vigor that she refuses to let go of: Just a couple weeks after these latest seizures, she came home from school showing her parents that she had re-learned how to jump. They encourage her relentlessly, and they wait.
Joe has worked in the Division of Otolaryngology/Head and Neck Surgery at Cincinnati Children’s for the past eight years. He’s heard other parents talk about the quality of care they’ve received, and he’s seen patients receive that care. But, he says, the experience from a parent’s perspective is entirely different. “There are some great resources here that I never knew about before.” And it’s aided him on the job as well. “I feel even more connected to the patient now,” he says.
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