Fighting on two fronts: Saltillo family faces down kidney disease, conversion syndrome

Adam Robison | Buy at photos.djournal.com Faith, family and friends have helped the Burks family of Saltillo – Bryson, from left, Brett and Chris – pull through two medical crises – Brett's kidney failure and Bryson's conversion disorder.

Adam Robison | Buy at photos.djournal.com
Faith, family and friends have helped the Burks family of Saltillo – Bryson, from left, Brett and Chris – pull through two medical crises – Brett’s kidney failure and Bryson’s conversion disorder.

By Michaela Gibson Morris

Daily Journal

One extended major health crisis can tax any family’s resources.

Two at the same time can swamp even the most solid family.

The Burks family of Saltillo has been fighting for their lives – first with Brett Burks’ kidney failure and then 10-year-old Bryson’s conversion disorder – a rare condition where psychological stress manifests physically. In Bryson’s case, it was seizures.

“A year ago, we didn’t know how long Brett would live,” said wife and mom Chris Burks. “Six months ago, we didn’t know what was wrong with Bryson.”

Faith, friends and family helped them pull through their darkest days. In the thick of the crisis, it was hard to take comfort in kind words about waiting for God’s plan to reveal itself.

“It is a journey; it is difficult,” Chris Burks said. “It’s not all grace and poise.”

The turning point for both father and son came in January in Birmingham. The medical staff at University of Alabama Birmingham Health System coordinated the resources both father and son needed to begin the journey home.

“Within those two days, everything fell into place,” Chris Burks said.

No warning

The first battle began with little warning. In the fall of 2012, Brett Burks began having headaches and blurry vision. He explained them away as the function of the interrupted sleep cycle that comes with working nights and having 40-year-old eyes that needed reading glasses.

When he went for an annual chest X-ray – a routine part of managing his asthma – the imaging staff became alarmed at his blood pressure – it was 220/128. Anything above 180/110 is considered a medical crisis

“They were really concerned,” said Brett Burks, who had no previous problems with his blood pressure. “They wouldn’t let me drive.”

Brett Burks ended up in the emergency room that night to get his blood pressure down. One test indicated his kidneys were not functioning well. A follow-up visit to the neurologist revealed his kidney function was down to 30 percent.

“We were scared, but not totally freaked out,” Chris Burks said. “You can live with 30 percent kidney function for a long time.”

But despite best efforts with diet and medication, Brett Burks’ kidney function kept slowly losing ground. As they were making preparations for an orderly transition to dialysis when the time came, he took a drastic turn for the worse and had to have emergency surgery to make a temporary connection. It had only been three months since his kidney crisis began. Dialysis kept him alive, but he continued to lose ground, finding it difficult to eat.

“Some people wait seven to 10 years to get a kidney,” Chris Burks said. “He wasn’t going to make it seven years.”

They began the process of getting on transplant lists. Chris Burks was ruled out as a potential kidney donor. Four friends, most of them from their Harrisburg Baptist Church family, volunteered to be tested as living donors. Each test uncovered hidden health problems for the potential donors.

“It was a roller coaster,” Chris Burks said.

A fifth volunteer, Chris Burks’ cousin, Karen Tidwell of Memphis, made it through, but wasn’t a perfect match for Brett Burks. The best bet was to be a part of a living donor chain, where Tidwell’s kidney would go to someone else, and another living donor would help Brett.

And then

Bryson had been a trooper through his dad’s illness, his mom said. There was no 9th birthday party because his December birthday fell during his dad’s dialysis crisis. He would finish his homework in the car while waiting for Brett Burks to finish his five-hour, thrice weekly dialysis sessions. But it still was hard for him. He groused about the bland dialysis diet the family was eating.

“Bryson was scared and worried that his dad was going to die,” Chris Burks said.

Bryson had been through one medical mystery. In kindergarten, he began having uncontrollable ticks. The jerking got bad enough, he stopped eating with utensils for a time. After ruling out a brain tumor and other life-threatening conditions, he was eventually diagnosed with Tourette’s syndrome, a largely benign condition that can be managed. The family was watching closely to see if Bryson would develop the more severe form of Tourette’s during his teen years.

In October 2013, then 9-year-old Bryson woke with an excruciating headache. Then he began having seizures. He spent months away from fourth-grade classes at Saltillo Elementary with repeated trips to emergency rooms and Le Bonheur Children’s Hospital in Memphis. The seizures were so violent his mom ended up pushing their couches together to create a safe space for Bryson.

They ruled out epilepsy, medicated him for migraines and gave him strong narcotics to try to keep him calm. The tentative diagnosis was conversion disorder. In Bryson’s case, the anxiety was manifesting in seizures.

“His mind is playing tricks on his body,” Chris Burks said. “But it’s not something he controlled.”

For weeks, Chris Burks resisted the idea that Bryson needed inpatient psychiatric treatment. No one else could calm him the way she could. Sessions at the Child Advocacy Play Therapy Institute at the University of Mississippi helped, but Bryson was having multiple seizures a day, lasting from five minutes to an hour and a half.

On Dec. 18, the day before his 10th birthday, Bryson told his mom the bad feeling was growing inside of him that usually signaled a seizure was on the way. The seizure never came, but the feeling kept growing.

“I just want to die,” he told his mom and his pediatrician.

In consultation with Bryson’s pediatrician, they tried to find a facility. But because of his seizures, inpatient adolescent psychiatric facilities couldn’t take him. After searching through all possible resources, they connected with UAB and Alabama Children’s Hospital in Birmingham. A neurologist was going to evaluate them, and there was a UAB physician working on a fellowship focused on conversion disorder. The two-day evaluation was set for Jan. 8 and 9.

Two days

The first half of the 48-hour observation at Children’s Hospital definitively ruled out epilepsy and confirmed the conversion disorder.

“‘We’re going to find you help here in Birmingham and come back with a plan,’” the doctors told her, Chris Burks said. “That was the turning point for Bryson, when he believed ‘I’m going to be OK.’”

At the same time, the phone was ringing in Saltillo. UAB’s transplant program was calling. The living donor chain was coming together. Brett Burks’ transplant was set for the end of the month.

Chris Burks went back to Bryson’s doctors with a conundrum – how to take care of Bryson and Brett. The solution was to move the whole family to Birmingham. They would stay in UAB townhouses while Brett was hospitalized for the transplant and while Bryson received intensive outpatient therapy. They made arrangements for Bryson to continue his school work so he wouldn’t fall behind.

“We’re going to help you get your family better,” the medical team told Chris Burks.

The transplant on Jan. 28 went well, although the recovery process hasn’t been without its ups and downs. Brett Burks was discharged from the hospital Feb. 5, but remained in Birmingham for follow-up until early March.

Bryson’s doctors took him off all the medicine and changed how his family responded to his seizures. Trying to comfort Bryson during the seizures was unintentionally reinforcing the conversion disorder. They also worked with him on strategies to manage his ticks with Tourette’s syndrome. In mid-March, Bryson was able to return to school. His tutors at home and in Birmingham had kept him on track with his fourth-grade class.

“Through this all, he’s stayed on the honor roll,” Chris Burks said. Giving and receiving

Through their odyssey, the Burkses have been regularly overwhelmed with the outpouring of good wishes and support from their friends, neighbors, church family and strangers. Cards have come from across town and across the country with encouragement.

“It’s been indescribable,” said Chris Burks, thumbing through a pile of handwritten cards from a local church.

The financial burden has been extremely difficult to manage. Chris Burks had been preparing for a job hunt when her husband got sick. They’ve been able to maintain disability insurance through his employer – which has been an essential lifeline for the medical insurance coverage.

“Our goal is to get back to work,” Chris Burks said. “We want to be normal again.”

But the family doesn’t have that happy ending yet.

The best medicine for the sense of helplessness has been finding ways to give back during their journey. They advocate for the Kidney Foundation of Mississippi. Bryson spoke at the Regional Rehabilitation Center telethon and a fundraising luncheon in support of the Children’s Harbor, where he received tutoring. Moved by a homeless woman in Birmingham, Bryson and his mom make regular stops at a Birmingham park to hand out snacks donated by their Facebook family.

“What if that’s God giving you chances to help someone?” he asked his mom as he made the case for helping that woman and others.

Bryson said he just wanted to share the hope that helped him get through with other kids facing down the dark days.

“It’s going to get better,” he said. “Life isn’t always going to be that hard. God’s always going to be with them.”