Kindergartner with lung disease benefits from therapy at UCLA
Initially, the young Burbank, Calif., resident was thought to have exercise-induced asthma. But as he got sicker, an X-ray revealed an enlarged heart, and doctors made the grim diagnosis of pulmonary hypertension - high blood pressure in the arteries that supply the lungs. His parents were quickly referred to a pediatric cardiologist at UCLA Mattel Children's Hospital.
After additional tests confirmed the diagnosis, Dr. Juan Alejos, UCLA associate professor of pediatric cardiology, started Lucas on a treatment plan that included Tracleer, an oral medication usually prescribed for adults and older children. The drug prevents thickening of the blood vessels, lowers blood pressure and helps the heart pump more efficiently. It also helps improve physical activity.
"UCLA, and only a few other hospitals in the U.S., are on the forefront of using Tracleer in the younger pediatric population," Alejos said. "We've been using the drug for the past two to three years, and the results have been good, with kids showing definite improvement."
"Since beginning treatment, Lucas has responded so very well to his medications," said Steve Van Wormer, Lucas' father. "It's like we have a different child."
Pulmonary hypertension is like a kinked garden hose in which the pressure builds and backs up. The heart is forced to work harder to pump blood through the arteries. If the pressure gets high enough, the heart cannot keep up, and less blood circulates through the lungs to pick up oxygen.
Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. The disease has no cure, except a lung or heart-lung transplant. Early diagnosis and intervention are crucial to improving the medical outlook for patients. When left untreated, pulmonary hypertension can be fatal within a few years.
On average, it takes two years to get an accurate diagnosis, partly because the symptoms are easily confused with other conditions, such as asthma, and partly because of a lack of awareness.
Lucas' parents are doing everything they can to help educate others about the disease. Steve, a freelance writer and voiceover actor, recently wrote and recorded a series of public service announcements for the Pulmonary Hypertension Association. He and his wife, Marina, also plan to start a Los Angeles-area pediatric support group for families who have children with the disease.
"We know that every day is a gift," Steve Van Wormer said. "Marina and I have tremendous hope for the future, as we see the advances in treatments and research, as well as the reversal of symptoms his drugs have already brought him."
UCLA Mattel Children's Hospital is one of the highest-rated children's hospitals in Southern California and is a vital component of UCLA Medical Center, which is consistently ranked the best hospital in the western United States in U.S. News & World Report's annual survey. Mattel Children's Hospital offers a full spectrum of primary and specialized medical care for infants, children and adolescents. Its mission is to provide state-of-the-art treatment for children in a compassionate atmosphere, as well as to improve the understanding and treatment of pediatric diseases. For more information, visit www.uclahealth.org/mattel.