Child's Play - Lupus Now Magazine Explores Activities For Children With Lupus
As early as age 10, Kevin Zhang of Potomac, Maryland was totally devoted to his first love: tennis. "As a little child, Kevin participated in all kinds of sports," say Stacy Zhang, Kevin's mom. "But by the time he reached the age of 10, he quit everything else. He became really serious about tennis and spent all his time improving his game and competing."
Kevin was a natural, and soon became a tournament player in the mid-Atlantic region. At the age of 12, Kevin represented his region in a national tournament in Tennessee.
In July 2006, Kevin developed chest pains during a match. "We took him to the hospital right away," says Zhang. "He was sent right to the emergency room. The doctors thought it might a heart issue, but they couldn't find anything."
After weeks of testing, Kevin was diagnosed with lupus, an immune system that is out of balance which can be destructive to any organ and tissue in the body. More than 1.5 million people in the United States have a form of lupus.
"My first reaction was to stop everything - and that included tennis," says Mrs. Zhang. "Kevin felt worse in the sun and after playing tennis, so I thought, 'That's it; he shouldn't be in activities. He needs to rest.'"
Zhang's response to the diagnosis was typical; a parent's attempt to protect her child. However, that might not always be the best decision, according to doctors who treat childhood cases of lupus.
"In my 30 years in this business, I've learned that a child's life will be more damaged by being told he can't do things [because of illness] than because he has the illness," says Thomas J.A. Lehman, M.D., chief of the division of pediatric rheumatology at the Hospital for Special Surgery, and professor of clinical pediatrics at Cornell University in New York.
"When it comes to sports and activities, the key emphasis is this: When possible, let the child decide," says Lehman. "They shouldn't be held back because you tell them not to try. After all, physical activity is good for everyone. Some may realize they can't do one thing or another, but then go out and surprise even me by finding out what they can do."
"Regular activity does lots of good for any child, including those with lupus," says Kathleen O'Neil, M.D., a pediatric rheumatologist and associate professor at the University of Oklahoma Health Sciences Center in Oklahoma City. "In particular, aerobic conditioning helps keep the heart and blood vessels in good shape. Weight bearing exercise helps strengthen bones and exercise helps prevent obesity, high blood lipid levels, diabetes, and all those inactivity-related problems that are epidemic in today's America."
The spring issue of Lupus Now magazine provides parents with some practical tips on how to help your child adjust to living with a chronic condition like lupus.
- Open a dialogue with your child and make certain the child understands everything he or she needs to know about the condition, including required medications and their importance.
- Put the child in control as much as possible, but make sure that parents supervise. Children may be tempted to skip a dose of their medications if they start feeling well.
- When possible, move play to indoor venues to avoid sun exposure; this is very important in lupus where exposure to UV light can trigger disease activity.
- When outdoors, children must use a waterproof, sweatproof sunscreen with an SPF of at least 30 that blocks both UVA and UVB all of the time; reapply often. Wear a hat with a wide brim and cover arms and legs with a lightweight layer of clothing.
- Don't force children to play, but if the child wants to keep going, parents should allow it. However keep an eye on fatigue and pain.
- Parents need to be super-vigilant to make sure children, particularly older ones, are complying with their doctor's orders, especially when it comes to prescribed medicines. Parents need to be just as diligent when it comes to taking the child to the doctor.
- Keep lines of communications open with coaches, teachers, other parents. Adults who better understand the situation are better equipped to keep an eye on the child and know when problems arise.
- Watch out for your child and have an escape route if things become too much. It may mean playing for only a few hours, several times each week, rather than all day, every day. But don't forget that the point of activities is for the child to have fun.
Published three times per year and distributed to 100,000 people with lupus, their family members, and health professionals, Lupus Now magazine includes 48 pages of the latest information on new treatments and therapies, clinical updates, lifestyle and wellness feature articles, personal stories and more.
For more information about subscriptions to Lupus Now, contact your local LFA chapter or place your subscription order online. You also can call 866-4-THE-LFA (866-484-3532) to subscribe to Lupus Now magazine.
With nearly 300 chapters and support groups, the Lupus Foundation of America is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus, and to providing support, services and hope to all people affect by lupus through programs of research, education, and advocacy.
Lupus Foundation of America
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