So many things can happen to kids as they grow up. They fall out of trees. They get chicken pox and blisters and hit in the head with balls. They fall off bikes. Parents know and expect this and fix things with bandages and hugs and kisses.
Sometimes a Band-Aid will not do. Sometimes, a healthy 12-year-old girl wakes up one day and has a seizure. Then she has another one. And within a month she has as many as 20 seizures a day – nothing can stop them, no drugs, no other treatment, and at one point exasperated physicians and specialists recommend inducing a coma to give the girl a break.
That’s what happened to now 13-year-old Keonnah Hinton last year just around the time when school was out. Keonnah’s mom, Lisa Hinton, had no idea what to do except to continue to call doctors and neurologists.
“We couldn’t get an appointment anywhere. Everyone said we had to wait six months. They said, ‘We don’t see an urgent reason to see her,’ ” said Lisa Hinton, who then began calling neurologists and epilepsy specialists across the state.
“We found a neurologist in Tacoma. It was Monday, and they could see Keonnah on Wednesday,” said Lisa Hinton. “And I was like, ‘We’ll be there, whatever it takes.’ ”
Medications were changed, and the seizures slowed down – until Keonnah started back to school in September.
“That’s when she began having seizure after seizure again. One day she had one every five minutes, and I took her to see her primary care physician,” said Lisa Hinton. Keonnah went from there to a Spokane hospital where she spent two weeks – before being transferred to Seattle Children’s Hospital. There, she was diagnosed with Rasmussen’s encephalitis, a brain disorder that causes ongoing seizures and can only be treated with brain surgery.
Doctors suggested Keonnah should have what’s called a hemispherectomy, a type of brain surgery where one hemisphere of the brain is removed or disabled. The theory is that once the malfunctioning hemisphere is gone, the other half will take over all necessary brain functions and the seizures will stop. Obviously this is high risk surgery, and it can have myriad disabling side effects.
“It was a terrible decision to have to make on her behalf,” said Lisa Hinton. “We tried talking to her about it all. We tried to explain the surgery. And initially she was very angry and didn’t want it. But there was nothing else we could do.”
When the day came, Lisa Hinton said Keonnah faced the operating room and the surgery without shedding a single tear.
“She knew it had to be done,” Lisa Hinton said. “She had seizures every three to five minutes – she was in this ‘out of it’ state of mind.”
Today, Keonnah is everything but out of it. The surgery did cause some paralysis on her left side and she was initially in rehab for a month and a couple of weeks at Seattle Children’s Hospital, but she’s making a great recovery.
She continues rehab three times a week and she often has two or three doctor’s appointments on top of that, yet she’d rather talk about school.
“I like science a lot and language art and reading,” said Keonnah. Mom adds that her grades never dropped below a 3.6 even while she was in the hospital in Seattle.
Keonnah looks adults straight in the eye and carefully answers questions in great detail,often surprising her parents with what she can remember.
“They had a school room at the hospital and once the doctor said you were well enough,you could go up there,” Keonnah explained. “They had all the homework for you from your own school.”
She doesn’t have seizures anymore.
When she returned to school in April she did a Power Point presentation about Rasmussen’s so her friends and classmates would know what was going on with her.
Keonnah gets frustrated. And angry.
Thoughtless comments leave her feelings deeply hurt.
“She’s come home and shared with me that people ask if she’s mentally ill, if she’s retarded,” said Lisa Hinton. “It’s just so hard to explain everything when we really don’t know why this happened.”
It’s common for people with seizure disorders to never know exactly why they have them.
“You know how sometimes there are books that can help you when unexpected things happen?” Keonnah said. “There are no books about Rasmussen’s. And why you get it.”
Her psychologist suggested that perhaps Keonnah could write her own book to help other kids.
She’s thinking about that, but mostly she’s focused on getting through the day.
“I’m usually so tired when I come home from school that I need a nap,” Keonnah said.
As Lisa Hinton has discovered, resources for epilepsy and Rasmussen’s patients in Spokane are limited.
“I just can’t believe it. There is a total lack of doctors for us in Spokane,” said Lisa Hinton. Trying to get in-home help with rehabilitation has proved pretty much impossible though the Hintons have insurance. Lisa Hinton has gotten used to choosing between different doctor’s appointments because they can’t make them all.
“You weigh the endocrinologist against the neurologist, and you know the one you can’t make may take half a year to reschedule,” said Lisa Hinton.
The family relies on national online resources and has found some support groups for epilepsy patients, but nothing has been a really good fit so far.
Lisa Hinton said Keonnah’s future is uncertain – she hopes the seizures will never resume, but no one knows for sure.
That’s not keeping Keonnah from making plans for when she grows up.
“I want to be an obstetrician and deliver babies,” she said.
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