In just a few weeks, Breanna Norton watched as her energetic 4-year-old son went from jumping on an indoor trampoline to burn extra energy to not having the energy — nor the desire — to move from the couch.
The boy who never seemed to sit still was suddenly sitting at the kitchen table coloring for hours on end.
“It was awful,” Breanna Norton said. “You watch your kid — he’s a kid that doesn’t sit still — going from that kid to wanting to always lay down.”
Her son Ethan, the youngest of three, was also changing physically. Ethan was retaining fluid, making his clothes no longer fit. He needed shirts two sizes bigger and pants with elastic waistbands. Some mornings, he would wake up and his eyes would be nearly swollen shut, Norton said.
“He didn’t even look like my kid anymore,” she said.
In January, Ethan was diagnosed with a kidney disorder called nephrotic syndrome. During the next couple of months, doctors tried various treatments to manage his condition without much luck.
During those months, the only thing Ethan wanted to do was color.
“He would just sit for hours and color,” Norton said. “There wasn’t much else he would do. He didn’t have the energy.”
All of that coloring led Ethan, now 5, to enter a national art competition sponsored by the American Kidney Fund. Ethan was named a finalist and will be featured in the organization’s 2016 calendar.
Those months also led to a course of treatment that appears to be working for Ethan, allowing the Vancouver boy to return to his energetic, soccer-loving self.
Kidney disorder
Around the first of the year, Ethan was appearing run-down, like he was coming down with a cold.
But then Ethan started to look puffy in the face. He was also losing energy and not eating much.
Then one morning, Ethan woke up with a swollen belly. Norton took her son to urgent care, where blood and urine tests revealed low white blood cell counts and protein in Ethan’s urine, she said.
More tests at Legacy Salmon Creek Medical Center revealed Ethan had nephrotic syndrome.
Nephrotic syndrome is a disorder that causes the body to excrete too much protein in the urine. The disorder is usually caused by damage to the clusters of small blood vessels in the kidneys that filter waste and excess water from the blood, according to the Mayo Clinic.
The type of nephrotic syndrome that doctors suspect Ethan has — minimal change disease — is the result of abnormal kidney function. The cause of the abnormal kidney function, however, is unknown, according to the Mayo Clinic.
Ethan was started on steroids at the hospital.
“They worked great,” Norton said. “He went into remission within a few days.”
But after about two weeks, Ethan’s body stopped responding to the steroids. Doctors at Randall Children’s Hospital at Legacy Emanuel in Portland tried a variety of treatments and diet changes. They tried medications and six-hour infusions. They imposed fluid restrictions that allowed Ethan to drink only 10 ounces a day. The limited him to 1,200 milligrams of sodium.
After two months with no improvement, Ethan’s doctors decided to slowly increase his fluid intake.
“His body just jump-started,” Breanna Norton said.
Ethan hasn’t been hospitalized since St. Patrick’s Day. He hasn’t been retaining fluid, his energy levels are returning and his muscle strength is improving, Norton said.
Ethan doesn’t currently have any diet or fluid restrictions, but he is taking an anti-rejection drug to suppress his immune system. Next month, Norton will meet with Ethan’s doctors to make a plan moving forward. With Ethan starting kindergarten at Image Elementary School this fall, his suppressed immune system could be problematic.
“It’s not the best solution, but it’s got him back to normal, back to himself,” Norton said.
So far, it doesn’t appear as if Ethan’s kidneys have suffered any permanent damage, but his doctors will continue to monitor him, Norton said.
Calendar contest
After his early relapse, Ethan’s nephrologist mentioned a calendar contest sponsored by the American Kidney Fund. She knew Ethan enjoyed coloring and asked if he wanted an entry form.
Norton took the form home and forgot about the contest. Then one day, while Ethan was coloring in the kitchen, Norton remembered the contest and asked Ethan if he wanted to draw a picture to enter in the national contest.
“He got really into it,” she said.
Ethan drew a few pictures — using a pencil to create an outline, then tracing the outline with a dark crayon, then coloring in the picture, careful not to get outside of the lines — and picked his favorite to enter in the contest.
“He spent hours coloring it,” Norton said.
Ethan titled the picture “Happy Hippo Kidneys and Me.” The drawing shows Ethan standing between a happy hippo and a kidney, both of which are trying to heal him.
Norton mailed in the entry and didn’t think much of the contest again. Then, she got an email saying Ethan’s drawing was one of 13 pieces selected for the American Kidney Fund’s 2016 wall calendar. Ethan’s drawing and the other winning artwork will be on display at the fund’s annual gala Sept. 30 in Washington, D.C.
These days, Ethan doesn’t spend much time coloring. He’s too busy using his newfound energy.
And when Ethan’s running around, bouncing from activity to activity, Breanna Norton reminds herself of the days when Ethan didn’t have the energy or desire to do anything but sit and color.
“It’s perspective, definitely,” she said. “It’s given us a new appreciation for the craziness a 5-year-old brings.”
