While her precious son cannot feel pain, Dina Kuolt does.
It is an emotional pain, borne of a mother’s frustration as she copes with her young boy’s rare condition, the unknowns of a strange disorder, the uncertainty of an unchartered prognosis.
All Kuolt knows is she is dealing with it the best she can.
Her son, Carson, is an active, good-natured 6-year-old boy who knows no pain, let alone fear. When he extends a hug, it innocently becomes a tackle.
“He loves everybody, he loves his friends,” Dina said. “He’s a lovable guy.”
And a little guy who continues to play and smile despite living with a rare condition called CIPA (Congenital Insensitivity to Pain with Anhidrosis). Such an extremely rare inherited disorder of the nervous system means he doesn’t feel pain, heat or cold. A person with CIPA cannot feel pain or differentiate even extreme temperatures. “Anhidrosis” means the body does not sweat, and “congenital” means that the condition is present from birth. The odds of being born with this condition are 1 in 125 million.
There are 84 documented living cases in the United States, including one in Auburn where a fun-loving boy is adjusting to the physical anomaly.
“We try to make him as normal as we can, but he knows that he is different,” Dina said. “We’re making sure he’s fine, that he grows and that he knows his limitations.
“He’s still young. He still doesn’t get it. He still doesn’t understand it.”
Carson’s case has been chronicled in the local media and will be the spotlight on the Discovery Health’s popular TV series, “Mystery Diagnosis,” set to premiere at 10 p.m. Monday.
The episode, “The Boy Who Never Cried,” will take viewers on a roller-coaster ride of emotions as the Kuolts endure misdiagnoses and dismissals before finding an answer.
The program intends to inform and educate the public about a disorder that exists outside of the medical mainstream.
“Carson is doing fine,” Dina said. “It’s still hard as before. In the beginning, it was really hard.”
In August of 2004, Carson was born as Dina and Jeffrey Kuolt’s first child. During a routine doctor’s appointment, the 3-month-old baby’s indifference to a series of immunization shots surprised his parents and nurses.
Weeks later, an unusual-looking sore developed on Carson’s tongue, but doctors believed it to be a consequence of Carson’s newly protruding teeth grinding on his tongue.
Days later, Jeff was horrified when a chunk of his son’s tongue plopped to the table while he was spoon-feeding him — and Carson again remained unperturbed. Concerned, the Kuolts rushed Carson to the hospital. But when doctors were unable to explain the bizarre incident, they released Carson.
Then, at 10 months old, Carson’s pain tolerance was again questioned when he remained stoic throughout his learn-to-walk pitfalls. Desperate for a diagnosis, the Kuolts sought a genetic specialist who performed a nerve biopsy to test for nerve-fiber diseases.
The results led to a diagnosis — Carson had CIPA.
His inability to feel pain renders him defenseless against severe bodily harm, and his inability to sweat prevents his body from stabilizing its core temperature, making Carson susceptible to high fever, seizures and even death.
With no cure or treatment for CIPA, Carson has learned to live safely with his disorder. Each day is challenging, but the Kuolts are determined to keep their boy safe.
“Health wise, he’s doing pretty good,” Dina said. “The biggest thing we have to work with now is his teeth. He grinds them a lot. He feels pressure (of the emerging permanent teeth), but not the pain.”
At Arthur Jacobsen Elementary school, a para educator watches him closely, especially at play when the first-grader likes to take on a Jungle Gym.
An occupational therapist has helped tremendously, and so has fish oil in his diet.
Swimming in a cooler climate, not soccer under the sun, appears to be a viable exercise outlet. He continues to enjoy computer games and being around his 4-year-old sister, Cameron.
The family remains optimistic, even as they watch and learn more about a disorder that continues to baffle doctors. Dina, a real estate professional, and Jeff, a middle school teacher and coach, are doing everything possible to help their son.
To learn more, the Kuolts correspond with two families with CIPA-diagnosed children – a young girl from Minnesota who lost an eye, and a 27-year-old woman in California who continues to move on with her life despite the condition.
What’s frustrating is the scarcity of documented cases of older men and women living with the disorder.
“The biggest thing that scares me is what if Carson has internal injuries?” Dina said. “What if he’s really hurt?”
So the family sets boundaries. For a 6-year-old, that’s difficult to understand as he explores his world.
The family will keep the faith as the medical profession tries to get a better grasp on the disorder.
“It’s going to be a long road, but he’s really a smart little boy,” Dina said. “I think he’s going to be fine. The school district has been great, and people have been willing to help him.
“I really do believe we have Carson for a reason … we’re not taking anything for granted,” Dina added. “Carson has shown us a lot. … We are so thankful to have him.”