River’s Journey Toward a Normal Life

Lisa Patrick

The Ashland Beacon

 

   On the outside, 10-year-old River Payne is an ordinary child... He attends fifth grade at Hager Elementary. He loves to play video games, collect Pokemon cards and play Fortnite. He also likes to go hunting and fishing and he really loves baseball. But River is actually an extraordinary child because he manages to conquer all of these things while fighting a severe form of epilepsy.

   A little more than three years ago, River had his very first seizure at school. His mother, Noey Payne, says that it lasted a really long time and estimates that he seized for about two hours. He was given medication at the emergency room that knocked him out for several hours. River was transferred to Cabell where they told her that the seizures were coming from the left side of his brain.

   River was started on an anticonvulsant medication called Keppra and began seeing a neurologist in Huntington. Soon he started having what his mother termed as “jerking” movements. The family later found out that these are called “auras.” They resemble seizure activity but they are not full seizures. His medication was increased once.

   Almost one year later, River had another seizure at school. This one was “twice as bad.” River stopped breathing and the school had to administer rescue medication. His parents met him at the emergency room and asked the hospital to give him another dose of medication but were told no. After he continued seizing for another hour, his parents fought with the hospital staff and finally got another dose of rescue medication administered to get him to stop seizing.

   River was once again transferred to the pediatric unit at Cabell. His medication was switched to Trileptal, which he still takes twice a day. He continued to see his neurologist at Cabell and his parents also made an appointment with a neurologist at Cincinnati Children’s Hospital.

   Noey Payne says that within 30 minutes at Cincinnati Children’s, they were learning why River was having seizures and the reason behind his epilepsy. It turned out that there is a bad spot on River’s left frontal lobe that did not quite develop all the way. It does not align perfectly with the other side of his brain. The part affected is the part that governs speech and memory. Noey Payne says that River’s memory “is horrible” and he “stutters every now and then” but they did not know that it was linked to the epilepsy diagnosis until they went to Cincinnati Children’s Hospital.

   There is a surgery that River may be a candidate for that has the potential to make the seizures stop. At the beginning of this month, River began the process of working toward having this surgery done. He spent January 6 through January 10 as an inpatient at Cincinnati Children’s hospital. River had to be monitored while off of his medications so that the doctors could see what happens when he goes into a full seizure.

   The room where River was a patient was equipped with a camera so that all his activity could be monitored. He was hooked up to an EEG machine the entire time he was there and there was a button for him or his family to press if started seizing or even started feeling funny.

   After three days off of his medication, River had a seizure that his mother called his “worst ever.” It was the first time that his father, Tommy Payne, had ever seen one of River’s full seizures. Noey Paynes said that “usually the doctors want to see several seizures but they stopped after the first one because it was so bad.” River had an MRI done and then went home.

   The doctors pulled all of the video footage so that they could see exactly when the activity began. River went back a week later for a functioning MRI. Now he has to wait on the team of doctors to discuss his diagnosis. Noey Payne explained that there are about 30 doctors and all of them have to agree that River is a candidate for surgery before he can move on to Phase Two of the process.

   Phase Two will also require surgery. The doctors will implant a device to monitor seizure activity. He will be admitted into the hospital during the time it takes for the doctors to get as many seizures as they need to make a final decision. The family had been told that this can take up to a month. The implants will then be removed and River will once again go home to wait.

   If River makes it to Phase Three and has the final surgery, the family is hoping that it will eliminate the seizures altogether or make them to where there is just a little activity here and there. But the possibility of a normal life does not come without risk. There is a possibility of permanent issues with his speech and with his memory.

   His parents make themselves “sick worrying about the choice of surgery.” While they think about how much better his life would be without seizures and medication, they also think, “what if he wakes up and he’s not River anymore?”

   In the meantime, River and his family say that the staff at Hager has been a huge blessing. Nurse Jessie (Reynolds) is so good with his condition that River has asked his mom why can’t he “just take her with me to the middle school next year.” Principal Phillip Caudill has gone in the ambulance to the hospital with River to be met there by his mother. Noey Payne says that the Hager staff are “all very close to our hearts and have made it easier on us to let our boy go to school without us.”

   River has his own Facebook page called “River’s Journey” and his progress can be followed there.

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