A family from Kisii, Kenya said they thought they would run out of options if medication didn’t stop their 10-year-old son’s seizures.
INDIANAPOLIS – A family from Kisii, Kenya, said they thought they ran out of options when medication didn’t stop their 10-year-old son’s seizures. Until they found out about a procedure at the Riley Hospital for Children that could improve Mao’s quality of life. The Oroko family said words cannot express their gratitude to the health care workers who have helped their youngest son.
Mao’s first attack
Mao Oroko has experienced seizures for the last eight years of his life.
“I don’t actually remember them (what happens during the seizures),” Mao said.
His father Obed said Mao had his first seizure when he was only two years old.
“It was in the morning. He was in the bedroom with his mother, ”said Obed. “I was in front of the house and my wife comes running with the baby. And she said, “Look what happens.” The baby was trembling. ”
They took their son to the hospital and the doctors gave them a diagnosis.
“Then they said … he might be epileptic,” said Obed.
The medication didn’t work
Seizure medication is designed to stop seizures, but about 30 percent of patients do not respond to medication alone and continue to have seizures.
That was the case with Mao. He was part of that 30 percent.
Obed said if the drug worked more effectively, Mao would have a seizure every month and a half.
“Once the dosage goes down, you will see a pattern every three weeks and we will have to go back to the doctor to increase the dosage,” Obed said. “A doctor actually told us that there was a chance he would never get over his seizures. In Kenya we had probably reached the end of the road. It was medication and then nothing.”
Obed said they were starting to worry about how Mao would go to school and what his life would be like.
The constant worry of a parent
Although Mao mostly had seizures in the evenings, his parents were concerned about what it would be like if he had one at school. They had considered homeschooling their son, and Obed said the day they took him to school, he and his wife stayed around wondering if they’d made a mistake.
“When I get a call and the teacher’s number comes in, I’m always like … ‘that’s it,'” Obed said. “I read a quote that I tacitly agree with. That you as a parent are only as happy as your saddest child can be. That means I’m only as happy as him. “
With Mao’s seizures, Obed felt that there was no way he could be happy.
Obed’s brother is a pulmonologist at the Riley Hospital for Children.
“So he said to me,” Let me ask one of my colleagues about this and see what he says, “Obed said.
This colleague was Dr. Jeffrey Raskin of Pediatric Neurosurgery at the Riley Hospital for Children.
“For patients with persistent seizures, despite appropriate medication, they have what is known as medical refractory epilepsy,” said Raskin. “And these patients deserve a surgical examination.”
This assessment includes EEGs, MRIs, and other images to help doctors prepare for diagnostic surgery. During the diagnostic surgery, intercranial electrodes are implanted into the matter of the brain. The data from the electrodes are then recorded and help the team determine a final surgical plan. It is needed because every patient is different.
Riley Hospital for Children “is the only program at the State Level 4 Epilepsy Center where we are able to provide this type of work-up and treatment to patients in need,” said Raskin.
If a child in Indiana has persistent seizures despite medication, they can turn to the Riley Hospital for Children’s program without a neurologist or family doctor referring them.
A painful challenge
“For the most part, surgery for every epilepsy patient is completely individual,” said Raskin.
The surgical team also uses skull robotics and laser ablation for minimally invasive interventions. However, this type of surgery can cost at least $ 500,000, with part of the cost being a three week hospital stay.
“We couldn’t afford it.” Said Obed. “So that was another painful …”
“Challenge,” said Mao, finishing his father’s judgment.
“Yes, painful challenge, painful thing to think about,” Obed continued. “But Dr. Raskin was very generous in telling us about the opportunity to investigate humanitarian aid through the hospital. So we prayed that it would come through for us. “
Riley’s Humanitarian Aid Department
“The Riley Hospital for Children has a humanitarian aid department. As a surgeon, it is very easy to contact this department and provide letters of support for visa applications. And contact our hospital CMO, Dr. Lane Cox, who ultimately decided this was an appropriate endeavor for the child and the family, ”said Raskin.
“Lo and behold, two weeks later we received a message that we were actually lucky. The hospital and administration will take care of the treatment, ”said Obed. “It was magical. We didn’t expect that. “
Obed was delighted with his son’s surgery, and Mao said he wasn’t nervous.
“I knew I would recover. I’m going to Riley Hospital, everything went as planned, so I was fine, ”Mao said.
He has not had a seizure since his operation.
“I am honestly really happy,” said Mao.
“We are very excited and look forward to a happier life afterwards,” said Obed.
Mao is currently doing physical therapy.
“Mao has an expected post-operative sensory deficit that will cause him mild weakness. The seizure zone was actually in his primary somatic sensory cortex, which is what underlies the body’s ability to feel on the left side, ”Raskin said. “So we were prepared for him to have a slight operational deficit and that will get better with time.”
Obed said he couldn’t wait to go back to Kenya, hug his family and tell them God willing Mao is seizure free.