Johnny Oliver

Finding a Way to End His Frightening Seizures

Photo by Tom Seawell.

When Johnny Oliver was five years old, he abruptly began having brief terrifying hallucinations. They occurred during the day and woke him from sleep. Doctors he saw in his hometown of Santa Rosa, Calif. couldn't identify a cause.

It took months before he ended up at the UCSF Benioff Children's Hospital Epilepsy Center, where the episodes were finally diagnosed as seizures. He was cared for by a team that included pediatric neurologist Dr. Joseph Sullivan, epilepsy fellow Dr. Nilika Singhal, and nurse practitioner Caroline Farless. They determined that Johnny had a focal cortical dysplasia in the right frontal region of his brain — a congenital malformation of brain cells that often causes epilepsy.

After trying unsuccessfully to control the seizures through various medications, surgery was the only other option. In January 2012, pediatric neurosurgeon Dr. Kurtis Auguste operated on Johnny to remove the malformation. His grandmother and guardian Paulette Oliver tells his story here:

How did Johnny's problems start?

When he was five he was going to a pre-school and his behavior started to get really, really bad. We knew he had ADHD, but he was behaving worse than he ever had. He wasn't listening; he was running, disrupting the class, refusing to take naps.

One day I had taken him to the gas station to get air put in his bike tires. The guy who ran the gas station gave him a candy bar. Johnny was eating it on the way home when suddenly he started screaming and yelling bloody murder. I'd never heard him scream like that before. I said "Johnny what is wrong with you?" I thought he'd bitten his finger. He said, "I had a nightmare where I went up high in an elevator and then it fell." I said, "Johnny how can you have a nightmare? You're not even asleep." After two or three minutes he stopped crying and was fine. So I shook the whole thing off. Then later that day, out of the blue he started jumping up and down and screaming bloody murder again.

What did you think was going on?

I didn't know. I called his dad who thought it might be growing pains. But Johnny was hallucinating and seeing things. And then the hallucinations started happening three or four times a day. Then they started happening when he was asleep. I took him to the emergency room and they told me it was night terrors and sent us home. But I began keeping a record and the hallucinations were getting worse and worse; he was having them 20 or 30 times a day and each would last 30 seconds or so. I took him to the emergency room two more times and finally they told me to take him to his primary care doctor. And the doctor said these things aren't normal.

What were his episodes like?

He would jump up and down and flap his hands and scream bloody murder. You could see the fear in his face. The first time he said he was in an elevator that fell. Another time he thought he was run over by a car. One time he thought he was on a sidewalk that went up in the air and then came down with him on it. Once he hallucinated about monsters. One night he woke up and was looking all over the bed for an egg; he accused me of taking the egg. He's a really sweet and loving boy but when he was hallucinating he would hit me or his dad. You could see the pain he was in. And then once the seizure was over it was like it didn't even happen. It got to the point where he couldn’t go to school. We started having a teacher come work with him at home.

How did you find out they were seizures?

Eventually we got to UCSF and he had a video EEG to measure his brain waves and then he had an MRI scan. That's when we found out they were seizures and that he had a growth in his frontal lobe, not cancer or a tumor but an area of abnormal brain cells. It was something he was born with. But the doctors thought the seizures could be controlled by medication.

How did you feel getting that information?

I felt sad for Johnny that he was going to have to take this medication for the rest of his life. But I also felt relieved to know what it was.

What happened then?

They put him on medication and we got things under control. And then we thought it would be okay to start working on his ADHD. So we put him on Ritalin. But the Ritalin stimulated his brain and made the seizures start up again. We took him off the Ritalin but then couldn't get the seizures under control with any medications. The doctors had been mentioning surgery off and on but I kept saying no. Now they told me that the only thing left to do was to go in and remove the growth in his head. Dr. Auguste said the success rate of the surgery was very high and that if they removed the growth, Johnny wouldn't have seizures or have to take medication any more. I couldn't have Johnny continue in so much pain, so I said, "let's go ahead." I was really scared, though, because I didn’t know if I'd made the right choice.

How did the surgery go?

It was major surgery that took eight hours. Then he was in the hospital for two days. The people there were great. I don't think he could have had a better doctor than Dr. Auguste. Johnny didn't complain about pain or headaches. He didn't complain about anything. The doctors and nurses were shocked at how fast he recovered. He went back to school a week or two after his surgery.

How has he been since then?

He's been seizure-free for a year. They can't say he's 100 percent cured because has still takes two seizure medications, Trileptal and Dilantin. The plan is to wean him from the Dilantin and keep on the Trileptal until he has been seizure-free for at least two years. He's also back on Ritalin for the ADHD; it makes a big difference for his focus. He's back in school, in first grade, in a special education program. He can be a little devil sometimes, but he's a very loving child. Everyone has been behind him 100 percent. Johnny's been really lucky.

May 2013

Interviewed by freelance writer Susan Freinkel.

Related Information

UCSF Clinics & Centers

Pediatric Brain Center

Pediatric Epilepsy Center of Excellence
1825 Fourth St., Fifth Floor
San Francisco, CA 94158
Phone: (415) 353-2437
Fax: (415) 353-2400

Conditions Treated

Our Experts

Kurtis Auguste
Dr. Kurtis Auguste,
pediatric neurosurgeon
Joseph Sullivan
Dr. Joseph Sullivan,
pediatric neurologist and epilepsy specialist
Caroline Farless
Caroline Farless,
pediatric nurse practitioner