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Overcoming 'Protected Child Syndrome': Kids, Exercise, and Chronic Illness

James Thornton

THE PHYSICIAN AND SPORTSMEDICINE - VOL 25 - NO. 11 - NOVEMBER 97


In Brief: The realization that appropriate exercise is good for most children who have a chronic illness has opened the way for programs that encourage physical activity in young patients. Such programs help patients shed the shackles of overprotection, build psychosocial skills, and live more normal lives. Physicians who know the benefits and risks of exercise can safely support physical activity for children who have chronic illnesses.

As a child, David (not his real name) underwent open heart surgery to repair a congenital ventricle defect. Though the operation was successful, he could not shake his own and others' perception that he was frail. Even by adolescence, he rarely went anywhere without his mother, and he never participated in sports. But today, thanks to an innovative program, David is a popular senior in high school—and a top scorer in a competitive hockey league. His extraordinary physical and psychosocial turnaround speaks volumes about the transformational effects of exercise for kids who have chronic health concerns.

David shed his sense of fragility with the help of a new program that exemplifies new medical thinking on children with chronic illnesses—the Yale Pediatric Physical Fitness Clinic in New Haven, Connecticut. Its premise is that the physical and psychosocial benefits of exercise are good medicine for all kids, including those who have a chronic illness.

"For years, children with any kind of chronic problem were told to play the piano instead of baseball," says John Fahey, a pediatric cardiologist at the Yale clinic. "They were treated like invalids—what we now call the 'protected child syndrome.'"

Breaking Down Barriers

Better surgery and medications, and an improved understanding of chronic diseases, have changed the conventional wisdom. "We like to think now that there are very few chronic conditions in which kids can't do at least some kind of exercise," says Fahey. (See "Sudden Death and Other Exercise Risks," below.) Fahey says exercise helps rather than hurts the course of most common chronic illnesses, from congenital heart problems and cystic fibrosis to asthma and obesity. "I tell kids who have had open heart surgery, for instance, that with the right training, there's no reason they can't run the Boston Marathon," he says.

The biggest benefit of the Yale program is that it changes children's lives, says program director Barry Goldberg, MD. "They become more active, start leaving the house and their video games behind, and spend more time with friends," says Goldberg, who is an editorial board member of The Physician and Sportsmedicine. "The most important goal is helping them reestablish psychosocial skills and have fun in their lives."

Primary care physicians are increasingly being called on to provide exercise guidance for their young patients. An excellent reference that provides safe participation guidelines is a book edited by Goldberg titled Sports and Exercise for Children With Chronic Health Conditions (1).

"In general, the benefits from participation in sports and exercise programs overwhelmingly outweigh potential risks," conclude contributing authors Michael Nelson, MD, of the University of New Mexico School of Medicine in Albuquerque and Sally Harris, MD, of the Palo Alto (California) Medical Clinic (table 1: not shown).

A New Clinic Concept

Goldberg first got the idea for the Yale Pediatric Fitness Clinic 6 years ago after a visit to The Hole in the Wall Gang Camp in New Haven, Connecticut. The camp—a retreat for children suffering from human immunodeficiency virus infection, cancer, and other severe illnesses—was founded by actor-philanthropist Paul Newman. "I saw a little girl running off the softball field with a great big smile on her face, and I remember thinking to myself, here's a model of kids flourishing with activity and feeling good about themselves," Goldberg says. "Let's see if we can expand the model from a week at camp to a more year-round approach to fitness."

Working with Yale's pediatric cardiologists, Goldberg realized it was critical to prove to parents and kids that exercise is safe and beneficial. Patients, with parents present, undergo a maximal exercise stress test in a hospital to determine their VO2 max and anaerobic threshold.

Fahey says such testing, which makes many parents anxious, can have a liberating effect on kids and their parents. "Maximum exercise stress testing in a monitored setting reassures everyone that the child can safely get his or her heart rate up to 200 like any other kid the same age. They don't get chest pains, they don't die—it's safe for them to exercise," he says.

In the next step, each child receives a tailored exercise prescription. Some kids do their initial few months of training at the clinic where they can be closely supervised by medical personnel. Others rent a stationary bike and heart rate monitor for a nominal fee and do their workouts at home. The short-term goal is to get each child up to at least 20 minutes per session at the target heart rate. The long-range goal is to help kids develop the knowledge and confidence to give up the heart rate monitors and exercise for fun.

"For some kids, this may be a mall walking program, periodically stopping to look at stores and rest. Other kids like to in-line skate, swim, or ride mountain bikes," Goldberg says. "Ultimately what we're really doing is allowing these kids to grow into adulthood feeling like they're normal."

To date, no graduate of the clinic has yet made it to the finish line of the Boston Marathon—but it's probably only a matter of time. "We've already had a couple kids run the New Haven Labor Day 20K road race," says Fahey. "They come to us sedentary, then start exercising on the stationary bike, get in shape and start feeling better about themselves. Pretty soon they're doing all kinds of things they haven't ever done before, and they forget about us altogether!"

For physicians Goldberg and Fahey, it's hard to imagine a more gratifying outcome.

Reference

  1. Goldberg B: Sports and Exercise for Children With Chronic Health Conditions. Champaign, Illinois, Human Kinetics, 1995


Sudden Death and Other Exercise Risks

One of the worst fears for parents of a chronically ill child is that the child will die during activity. But in reality, sudden death during exercise is extremely rare in young people. The incidence of exercise-related sudden death is approximately 0.75 and 0.13 per 100,000 young male and female athletes per year, respectively (1).

Few conditions place a child at significantly heightened risk for sudden death, and virtually all are limited to specific heart problems. These include:

  • hypertrophic cardiomyopathy,
  • anomalous coronary vessels,
  • myocarditis,
  • severe aortic stenosis (greater than 40 mm Hg gradient at rest),
  • Marfan syndrome with aortic dilation, and
  • certain arrhythmias.

Patients who may have any of the above conditions should be referred to a pediatric cardiologist for in-depth screening before they are encouraged or permitted to exercise.

A number of other chronic health concerns, though they may not pose a significant risk of sudden death, do entail serious risks. Scuba diving, for instance, is a dangerous sport for a child prone to seizures. Similarly, a patient who has a clotting disorder should avoid high-velocity or contact sports in which the risk of abrasion is high. The same holds for young patients who have implanted pacemakers, which are susceptible to malfunction after blunt trauma.

With proper safeguards in place, however, most chronically ill children can benefit greatly from exercise. Prophylactic medication, for example, can effectively prevent bronchospasm in young patients prone to exercise-induced asthma (EIA). Indeed, up to 10% of United States Olympians have some level of EIA (2)—compelling proof that the condition need not hinder world-class performance.

Other disease-specific guidelines, such as avoiding heat stress and ensuring proper hydration for cystic fibrosis patients, can make exercise a safe and effective adjunct to treatment. More specific exercise recommendations and warnings for a host of chronic diseases can be found in Sports and Exercise for Children With Chronic Health Conditions (Human Kinetics, Champaign, Illinois).

Reference

  1. Thompson PD: The cardiovascular complications of vigorous physical activity. Arch Intern Med 1996;156 (20):2297-2302
  2. Pierson WE, Voy RO: Exercise-induced bronchospasm in the XXIII summer Olympic games. N Engl Reg Allergy Proc 120218;9(3):209-213

James Thornton is a freelance writer in Sewickley, Pennsylvania.


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