Journal of Advanced Practice Nursing

How RN Parents Helped Their Baby With Epilepsy, Having Over 100 Seizures A Day


By Elaine Wyllie, M.D. and Bill Bingaman, M.D.

Zacchaio's loving and forward-thinking parents knew he was special when he came into the world two months early with some unique patterns of coloration on his beautiful baby skin. His physicians suspected that a genetic disorder had influenced the formation of his skin before birth, and since the prenatal development of the skin and brain are interconnected, it was not a complete surprise when Zacchaio developed epilepsy five months later.

Zacchaio's parents are both in the nursing profession, and their advocacy for his health is steadfast and highly informed. They did not wait long to explore their options. When Zacchaio continued to have over 100 seizures a day despite treatment for about six weeks with conventional medications and cannabidiol oil – a form of medical marijuana that has been known to help with epilepsy in some cases – they traveled across the country for consultations at three different epilepsy centers. "By six months of age, our son was already a very sweet, animated and playful child," his mother explained. "Our objective was to stop the seizures so that he could continue to learn and develop."

Epilepsy surgery is routinely designed to remove as much of the troublesome region as possible, while meticulously preserving any nearby areas involved in important brain function. Zacchaio's case reminds us that for some people, the optimal way forward is not entirely clear. Both surgical approaches entailed some potential risks and some potential benefits.

At Cleveland Clinic, as at many centers, all of the experts collaborate to discuss the facts in every case. When Zacchaio's specialist met with his parents to discuss the options, she presented a consensus opinion forged from everyone's knowledge and expertise.

His parents were perceptive, knowledgeable and open-minded, and together with their doctor they made the decision with ease. Their first inclination was for hemispherectomy, to stop the seizures as quickly and completely as possible. But after further consideration and guidance, they elected the more conservative approach.

Zacchaio went home from the hospital within two weeks of the surgery. Initially it appeared that the result was imperfect, because he had mild seizures during the first four days after the operation. But then everything subsided, and the family recently celebrated his first full year seizure-free. His development is progressing well, and his previous mild left-sided weakness has completely disappeared.

Specialists agree that the first pillar of treatment for epilepsy, of course, is medication. The objective is daily prevention of seizures, and with meticulous care, this goal can be achieved in most cases. But for 35 to 45 percent of people with epilepsy, the results with medication are imperfect. For some of these individuals, epilepsy surgery is an option.

The likelihood of surgery to stop the seizures varies from case to case, depending on several factors. Research informs us that the results may be better if the surgery is performed early on in the disease process. For the type of surgery that Zacchaio underwent – called temporo-parieto-occipital, or TPO, resection – the Cleveland Clinic finds that 75 percent of patients are completely free of seizures after 10 years.

Zacchaio's parents are optimistic and realistic at the same time. "Each night we thank God and finish our prayers by asking for one more day seizure-free," they wrote in an email to us on what they affectionaly call his TPO-versary. "So far He's been very accommodating of our requests. :)"


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