Cushing’s Disease Causes Abnormal Growth
By Dawn Dorsey
A mother usually feels a sense of pride when she notices her child is growing. But Belinda Rivers knew something was wrong when her third-grader, Kevin, started to outgrow school-uniform pants as fast as she could buy them.
He gained 30 pounds in a year, but his appetite had not changed.
“The way he was eating just didn’t justify his weight gain, and he’s so active,” she says. “I knew kids had growth spurts, but this was ridiculous.”
Her intuition turned out to be right when Kevin was diagnosed with Cushing’s disease, a condition caused by a noncancerous tumor on the pituitary gland, the pea-shaped gland located at the base of the brain that controls the production of hormones. It also secretes growth hormone, which is responsible for growth in children and metabolic function in adults.
Weight gain is one of the primary symptoms of Cushing’s disease.
Weight began to balloon
Kevin’s pituitary tumor was causing the production of too much adrenocorticotropic hormone (ACTH). In turn, the ACTH stimulated the adrenal glands (which make steroid hormones and adrenaline). That led to an overproduction of cortisol and weight gain.
Despite the fact that he played football and baseball, Kevin quickly became overweight during his third-grade year. He went to an active outdoor camp and came back 10 pounds heavier. Then other kids started teasing him because of the extra pounds.
Belinda was at her wit’s end. Although Kevin had always been healthy and required only annual well-child pediatrician visits, they made a trip to the doctor. Belinda told him she knew something was wrong. Her trusted physician didn’t share her concern, however.
“He said, ‘Belinda, you and your husband are big people. He’s just big.’ But I knew something was wrong,” Belinda says. “I told him I wanted Kevin tested for everything.”
Her doctor referred Kevin to an endocrinologist (a physician who specializes in hormone disorders) in Slidell, La., close to where the Rivers family lives. Kevin’s blood and urine tests revealed high levels of cortisol, and a magnetic resonance imaging (MRI) test showed a tumor on his pituitary gland.
Photos told the story
When Belinda brought Kevin to M. D. Anderson, she was clutching two of Kevin’s baseball team photos: one from the year before his illness, one from the current year. She wanted to have proof in case anyone doubted there had been a dramatic change.
The photos were worth a thousand words to Steven Waguespack, M.D., associate professor in M. D. Anderson’s Department of Endocrine Neoplasia and Hormonal Disorders.
“Kevin had gained about 30 pounds in a year, but he had not grown any taller, which is very concerning for an underlying endocrine problem in children,” Waguespack says. “Weight gain around the middle is a classic symptom in adults, but in kids the weight gain is often distributed all over the body. That’s how it was with Kevin. However, he didn’t have some of the other classic symptoms of Cushing’s like muscle weakness, stretch marks or skin thinning.”
The type of tumor on Kevin’s pituitary was unusual as well. While most Cushing’s tumors are very small, often not visible even on an MRI, Waguespack says Kevin’s was large.
“Kevin is proof that every case of Cushing’s doesn’t always have classic symptoms,” Waguespack says.
Surgery provides a solution
Two weeks after Kevin's first visit to M. D. Anderson, Ian McCutcheon, M.D., a professor in M. D. Anderson’s Department of Neurosurgery who specializes in pituitary surgeries, removed Kevin’s tumor. The entire family traveled to Houston to be with him during his four-day hospitalization, and Kevin’s baby sister, Bailey, took her first steps at M. D. Anderson.
After surgery, Kevin was placed on steroids and thyroid replacement medication. He has since stopped taking the steroids, and Belinda expects the thyroid medicine will be stopped at his next checkup.
“He has been really brave,” Belinda says. “Sometimes right after the surgery he would say, ‘I think my tumor’s coming back.’ But we would tell him everything was OK and he would forget about it.”
Future filled with fun
It has been a year now since Kevin’s surgery. He’s 3 inches taller and has lost 18 pounds. Belinda says the mood swings that plagued him before surgery have disappeared.
Waguespack says Kevin’s future looks good.
“There’s always a chance of relapse with Cushing’s disease, especially when the tumor is large like Kevin’s,” he says. “But if a patient is going to relapse, it usually will happen within the first few years after surgery. If Kevin can make it five years, he will probably be OK.”
But Kevin doesn’t spend time worrying about it. He’s too busy playing any sport that comes along and racing his Christmas present/post-surgery treat: a brand-new dirt bike.
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