From the Archives: Spring 2008 issue of Lupus Now
Child’s Play: Active attitudes for young people with lupus
by Mary Dixon Lebeau
As early as age 10, Kevin Zhang was totally devoted to his first love: tennis.
"Oh, sure, as a little child, Kevin participated in all kinds of sports," says 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, who lives with his family in Potomac, MD, was a natural, and soon became a tournament player in the mid-Atlantic region. "He competed in singles and doubles, and he always did well," says Zhang, adding that her son represented his region in a national tournament in Tennessee at the age of 12. Mom, Dad, and little sister Charlena cheered him on from the sidelines.
A year later, the family again provided its support and love as Kevin fought the onset of lupus. In July 2006, Kevin developed chest pains during a match. "We took him to the hospital right away," Zhang says. "He was sent right to the emergency room. The doctors thought it might be a heart issue, but they couldn’t find anything."
After weeks of testing, Kevin was diagnosed with lupus. Once his physicians got his lupus under control, the pain subsided, but it would return whenever he spent time in the sun.
"My first reaction was to stop everything -- and that included tennis,” says 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.
It was a reaction that Ciara Logar, from Ontario, Canada, knows well. "Before I was diagnosed with lupus at the age of 8, I swam outdoors regularly, I played soccer, and I was a figure skater," the high school senior says. But Ciara’s parents sought medical advice after a day in the sun caused their daughter to experience odd symptoms, including back pains and fever.
The symptoms persisted, and Ciara was hospitalized. "For three and a half weeks, they had no idea what was wrong with me. I was tired all the time, very sick, and there was fluid around my heart," she says.
Ciara had a grand mal seizure and a stroke before the doctors found the right combination of medications to treat the lupus symptoms and suppress her overactive immune system.
"I finally started feeling better, but my parents were scared to death," Ciara remembers. "All my physical activities stopped. My parents sent me back to school, but just half days at first, and I wasn’t allowed to skate or swim or participate in any of the activities I enjoyed before."
Learning your child has a chronic illness is never easy, and most parents prefer to err on the side of caution -- but that may be a mistake. Medical experts agree that once the child’s condition has been stabilized and they are feeling better, they should be given every opportunity to participate in activities they enjoy.
"In my 30 years in this business, I’ve learned 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."
The New Normalcy
During childhood, most children seek out ways to fit into their world. Naturally, this will be more difficult for a child with a chronic illness, whose world includes multiple medications, regular doctor’s visits, lab tests, and other limitations not usually placed on their peers. Still, regular activities -- including organized sports, assigned chores, even just walking the dog in the park -- allow the child to feel the same as everyone else.
"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 of pediatrics 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."
But the benefits to fun activity go beyond the body. "Participation in activities is essential for social development," O’Neil adds.
Of course, parents must monitor the child’s activities and make adjustments, if necessary. "You may have to redirect a child’s interest, particularly if his chosen activity is outdoors, where exposure to the sun can be dangerous," says Lehman. "Redirect the child away from activities that may cause problems and suggest similar indoor activities. Still, that does not mean allowing the child to shut down."
After Kevin received the all-clear from his doctors, Stacy Zhang allowed him to return to the tennis courts -- the indoor courts, that is. "He really wanted to play tennis. We tried to encourage ping-pong, but tennis is his passion," she says.
Under his parents’ watchful eye, Kevin picked up his racquet again and plans to play for his high school team this year. "We don’t allow him to play in the regional tournaments anymore, or at the same intensity he played before," says Zhang. "Now he just plays twice a week and it’s indoor, but he’s happy to be back at all.
"For Kevin, playing tennis means being normal," says Zhang.
For three years after her diagnosis, Ciara stayed off the soccer fields. When she finally convinced her parents to allow her to return, she quickly discovered she couldn’t go back to the sport. "I was really sun-sensitive, and I just couldn’t stay outdoors,” she says. So she redirected her energies to a new sport -- indoor ice hockey.
"My parents were hesitant, particularly my mom, because both of my brothers play ice hockey and it gets rough," Ciara says. But once her mom saw that the women’s league didn’t include the roughhousing she saw during her sons’ games, she allowed Ciara to sign up.
"I feel better when I’m playing hockey," says Ciara, a member of the team’s defensive line. "When I get on the ice, I feel better. I push myself and focus on the game.
"It helps me beyond the physical exercise," she adds. "I benefit mentally and spiritually as well."
Most outdoor sports and activities have indoor counterparts. Seek out indoor soccer leagues, swim clubs, or tennis courts to allow your child to pursue his or her favorite activity safely.
Enemy #1: The Sun
The move to indoor arenas is important because of the dangers of sun exposure. "There are people who get away with going out in the sun and don’t get in trouble, but I’ve also seen people with lupus who’ve had drastic complications after being out in the sun," says Lehman. "It’s a very well-documented, scientifically understood risk, and it’s just not one you want to take."
Convincing her child to avoid the sun was a challenge for Bronx, NY-based mom Joei Richards. Daughter Jillien, 14, was a full-fledged sun worshipper when the telltale butterfly rash appeared on her face in early autumn 2006. She was diagnosed with lupus in October of that year.
"Now we visit the Marriott to lounge by the indoor pool," says Richards. "When we’re outside, I insist she wear a bathrobe and sun hat as well as a lot of sun-screen. She hates that she has to wear the protective gear, but I was straight with her from the beginning. The sun is her enemy."
Richards’ approach is a good one. "Don’t say, 'You can’t go to the beach.' Don’t make it a total ban," says Lehman. Instead, he suggests going out after 4 p.m. and completely avoiding sun exposure between 10 and 4, when the sun is most direct. Tanning salons can be just as dangerous as the real thing, so steer your child clear of them as well.
Make sure your child is well-protected when exposure to sunlight is unavoidable, even if it’s minimal. "Minimize sun exposure by using a waterproof, sweat-proof sunscreen with an SPF of at least 30 at all times and reapply it often," says O’Neil. "Use a hat with a wide brim whenever possible, and cover arms and legs with a lightweight layer of clothing. Lots of kids use those newer bodysuits that wick sweat, so most kids with lupus won’t feel different wearing such clothing."
Other tips you need to know: Use a sunscreen that blocks both UVA and UVB rays; apply sunscreen to your neck, temples, and ears -- areas that often are affected by cutaneous lupus; wear clothing made of sun-protective fabric; be aware that UV rays still come through on cloudy days; and don’t forget that UV rays are even stronger around the water and the snow.
Stephanie Larson, 7, couldn’t imagine a life without skiing, swimming, soccer, and gymnastics, but when pain from lupus forced her to do her cartwheels with fists instead of flat palms, her mom knew that adjustments had to be made.
"When she was diagnosed with lupus, we immediately asked her doctor what she could do and what she couldn’t do," says Stephanie’s mom, Elizabeth Swisher, M.D., an associate professor and researcher of gynecologic oncology. "Fortunately, steroids helped her pain immediately. Our pediatrician told us not to force her to play, but if she wanted to keep going, we should allow it."
Stephanie’s major limiting factor is fatigue. "We have to judge how much she can take on," Swisher says. "She’s not like other kids, who seem to recharge quickly. Once she burns her energy, she is exhausted."
So the active Seattle, WA, family has adjusted its routines. Four-mile hikes were cut back to a mile and a quarter. Stephanie’s mom and dad offer piggyback rides whenever they see their daughter slowing down.
"The hardest part is finding the right balance," says Swisher. "We want to encourage her to keep going, because that’s what she needs for a full life. But we also need to respect what she’s saying when she’s in pain."
Fortunately, most pain and fatigue can be controlled medically. But parents need to be super-vigilant to make sure children, particularly older ones, are complying with their doctor’s orders. "From a physician’s point of view, the biggest problem for parents of kids with lupus is compliance. Either the child forgets to take their medicines or the parents or child gets lazy when the child seems well. That can get the child back into trouble with lupus," Lehman says. "Don’t just give a pill. Make sure it is taken," he adds.
Parents need to be just as diligent when it comes to taking the child to the doctor. Regular appointments must be kept, of course, but if the child appears sick, head to the doctor sooner rather than later, Lehman says.
Don’t worry about overscheduling, as long as the child is thriving and having fun. "The child with lupus doesn’t have to be underscheduled. Let the child decide," says Lehman.
It’s also essential to keep the lines of communication open with the whole "team" -- which includes teachers, coaches, other parents, and any adults who will be supervising your child. Swisher keeps coaches and the staff at Stephanie’s school informed, and Stephanie herself answered questions after sharing the book Loopy Lupus Helps Tell Scott’s Story (available only through the LFA at shop.lupus.org) with her class. Adults who understand the situation are better equipped to keep an eye on the child and to know when problems arise due to lupus.
"Also remember to communicate with your child," says Zhang. "Find out how he or she feels, keep a close watch, and be very supportive."
In the end, your child’s best safety net is you. "Watch out for your child and have an escape route if things become too much," says Swisher. For Stephanie, that may mean skiing for only a few hours instead of all day. For older children, like Kevin Zhang, it may mean giving up traveling with the tournament tennis team and instead working for a spot on the local team. And for Jillien Richards, it may mean swimming at the Marriott instead of in the lake. Find safer situations for your child with lupus, and be there to catch them -- or call the doctor -- if problems arise.
Fun, Fun, Fun!
But don’t forget that the point of activity for any child is to have fun. After all, not many kids go on to become professional tennis players or mountain climbers, but all will benefit from the exercise, the socializing, and the laughter associated with activities they love.
"I think the more they do, the more they’ll feel like a normal kid," says Swisher. "I never want my child to be defined by the disease. It’s just something she has to deal with. After all, we all have challenges."
So let your kids pick an activity, head to the great indoors, and have some good, old-fashioned fun. Your whole family will feel better for it.
Childhood is full of ages and stages -- and adjustments. But when should teenagers start taking control of their activities?
"Parents and physicians can help teenagers better manage their lupus by opening a dialogue with the child and by making sure the child understands lupus, the medications, and their importance," says Kathleen O’Neil, M.D., a pediatric rheumatologist and associate professor of pediatrics at the University of Oklahoma Health Sciences Center in Oklahoma City.
Then, put the teen in control as much as possible. "I remind teens that they may not be able to control the fact that they have lupus, but they usually learn to manage the disease," she says. According to O’Neil, teens can begin to take charge by knowing what medications they take, including the dosages and when to take them -- but make sure you supervise. More than one parent has been fooled by a teen who skips a dose or two when feeling well.
"Allowing the teen to take charge works much better than making a child dependent on the parents," says O’Neil. "After all, the most important developmental task for a teen is becoming independent.
All work and no play may make Jack a dull boy, but all play and no work could make Kevin an uninformed one.
That was Stacy Zhang’s fear, and she decided to do something about it. "When an adult is diagnosed with a disease, he usually researches and learns as much as possible about it and the support he can receive," Zhang says.
However, she didn’t think son Kevin, just 14, was likely to follow suit. So Zhang picked up the phone and found a way for her son to get information about lupus direct from the LFA.
"I searched the Foundation’s site on the Internet and called Tina Carter in human resources," she remembers. A short chat later, and Kevin was in -- as a summer volunteer at the LFA headquarters in Washington, D.C.
Last summer, Kevin spent time in various departments, filing, inputting data on spreadsheets, sorting mail -- and learning about the Foundation itself. He volunteered 60 hours over the summer and is contemplating a return this year. "He took the work quite seriously at first. I had to tell him it was okay to take a break," his mother recalls.
Like any intern, Kevin can use his time at the LFA for résumé building, but Zhang says the benefits were more profound. "I definitely believe he understands more about lupus and how the Foundation works," she says.
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