Freshman manages high school and cystic fibrosis
Nov. 6, 2013 at 5:06 a.m.
Abdominal pain dropped Brandyn Seals to his knees in April. Tina and Kenny Seals packed their bags and drove their only child, a 14-year-old freshman at St. Joseph High School, to Texas Children's Hospitalin Houston.
They could not know that the two-hour trip would end in irreversible changes to their son's life.
Ten minutes before surgery to remove Brandyn's gall bladder, the doctors learned that pancreatitis associated with a genetic disorder was the cause of his pain. Tests revealed that Brandyn has cystic fibrosis.
The news forced the teenager to briefly reconsidered his dreams to attend Texas A&M University and become a veterinarian when he learned the average life expectancy for a person with his disease is 37.
"I didn't know if I wanted to go to school until I was 26, and then pay off a car," Brandyn said. "I thought I might just go to work and go fishing."
His parents immediately scheduled an appointment for their son to discuss his concerns with his team of caregivers at the hospital.
Doctors told Brandyn he could live a long life if he managed his disease properly with the tools they gave him.
Aside from his recent diagnosis, Brandyn is a typical teenager. He hangs out with his friends, talks during class, plays football and soccer, attends Sea World camp during the summer, and fishes for trout and flounder.
His excruciating abdominal pain began in February, but went undiagnosed at two hospitals before his parents took him to Houston.
"Doctors say pancreatitis is one of the most painful condition a man can have - that it rivals labor pains," his mother said.
The sharp stabs last an average of one minute, but have lasted as long as five. Time between attacks varies from seconds to hours. A morphine drip relaxes Brandyn, but nothing can stop the pain.
"At first, I was angry at the other hospitals because they couldn't stop his pain," Kenny Seals, his father, said. "Later, I understood that they couldn't stop it."
As Brandyn learned the freshman ropes in a new school, he also adjusted to a broken thumb that kept him from playing football for six weeks, copious amounts of makeup work and a new regimen to manage his health.
The teenager must avoid greasy foods, consume digestive enzymes every time he eats, take vitamins A,D,E and K twice a day, and perform breathing treatments twice a day for the rest of his life.
"At first his friends left the bedroom when he had his breathing treatments," his mother, Tina Seals, said. "Now they spread out on the bed with him."
Brandyn's 30-minute treatments begin with puffs of an inhaler to clear his airways. A nebulizer feeds his lungs with saline mist through a face mask while a vest vibrates his chest rapidly to break up the mucus. Intermittent huff coughs bring up the gunk.
Brandyn has also received support from his classmates' parents.
About 70 of Brandyn's friends and their parents filled the Seals' home a couple of days after his return from the hospital.
"There were lots of questions and lots of tears," his mother said. "The disease sounds pretty scary when you read about it online."
Cystic fibrosis is a genetic disease of the lungs and digestive system that affects only 30,000 children and adults in the United States, said Sally Mason, a registered nurse and cystic fibrosis coordinator for Texas Children's Hospital.
"Our child life specialist helps children cope with and understand their disease at age-appropriate levels," Mason said.
The average age of diagnosis in Texas was 18 months until newborn screening began in 2009. Today, the average age is 6 to 8 weeks, she said.
Brandyn had some respiratory issues when he was young - sinus infections and allergies - but nothing that seemed unusual, his mother said.
"Doctors said his lungs are in good shape because he was so active," she said.
In people who have cystic fibrosis, water and sodium do not move through the cells of the body properly, which makes mucus dry, thick and sticky, Mason said. The goo accumulates in the lungs and blocks the flow of digestive enzymes to the stomach.
"Liquids in the body are like maple syrup in CF patients," she said.
About 2,000 genetic mutations, which range from mild to severe, are associated with the disease. While 98 percent of those with the disease are infertile, Brandyn's fertility is fine.
Researchers have already found a cure for a mutation that affects 3 to 4 percent of people with cystic fibrosis, Mason added.
Doctors have sent Brandyn's mutation to Harvard researchers, his mother said.
Fifty years ago, cystic fibrosis claimed mostly toddlers' lives, Mason said. Next year, the number of adults with the disease will outnumber the number of children for the first time.
"Teenagers don't want to do what you tell them," Mason said. "But they need to take care of themselves, so they can benefit from cures if they come along."