In their search for ways to make their children feel better, many families are turning to complementary therapies. But are they safe?
An estimated three-fourths of children with rheumatic diseases have tried complementary and alternative therapies. If your child is among them – or if you’re considering joining the ranks of those who are – there are some things your doctors want you to know.
One Family’s Story
When 15-year-old Tyler Zickler was diagnosed with juvenile arthritis that so was so painful he could barely walk, his parents faithfully gave him the methotrexate and prednisone his doctor prescribed. They also gave him something his doctors didn’t prescribe – a cocktail of nutritional supplements, including several vitamins, coenzyme Q-10 and fish oil.
A year and a half later, Tyler is lifting weights, playing baseball and running a seven-minute mile – all without pain. He is completely off the medications his doctor prescribed but continues to take nutritional supplements to which his parents attribute the control of his disease. But Tyler’s doctors are not convinced. “They said, ‘Well this happens with arthritis. You can have a flare and then not have another for 20 years,’” says his mother, Debra.
A Growing Trend With Some Concerns
Tyler is among the estimated 73 percent of children with arthritis using treatments beyond the realm of conventional medicine. Such therapies are collectively referred to as complementary and alternative therapies. But more precisely, they are complementary if used along with conventional medicine or alternative if used instead of it. In many cases, they do not have scientific proof of explanation for their effectiveness.
Although complementary and alternative therapies include such diverse practices as massage, acupuncture and hypnosis, a study by doctors at University of Pennsylvania School of Medicine and Children’s Hospital of Philadelphia shows that vitamin and mineral supplements and prayer account for almost two-thirds of complementary and alternative therapy use among children.
While doctors, like Tyler’s, don’t always put a lot of stock in them, most condone these therapies – unless they are harmful. “I’m not interested in talking anybody out of anything, but I am interested in knowing what children are exposed to, so I can counsel parents,” says Ilona Szer, MD, director of pediatric rheumatology at the Children’s Hospital of San Diego and professor of clinical pediatrics at the University of California San Diego School of Medicine.
Problems can arise, she explains, when a treatment is inherently dangerous or has the potential to interact with a treatment the doctor has prescribed. For example, if the parent is giving the child a supplement (such as echinacea) that is purported to boost the child’s immune system, while the medication the child’s doctor has prescribed is designed to suppress the immune system’s response against the child’s own joints and tissues, the interaction could be bad.
Unfortunately, in many cases, doctors simply don’t know what such therapies do or might do, because many haven’t been well studied – particularly in children. Even therapies that are well accepted in adults may have completely different effects in children. Dr. Szer cites glucosamine and chondroitin as a possible example. Glucosamine is a substance that helps the body make cartilage. Among adults with osteoarthritis, it is one of the hottest remedies for pain relief. “But because children have growing bone, there is a notion that they could incorporate some of this glucosamine and into their bones and really create problems with bone integrity,” she says.
Another example is soy-based supplements that may contain plant-based estrogens (plant compounds with a chemical structure similar to that of estrogen) in them, says Kenneth Schikler, MD, professor of pediatrics and director of pediatric rheumatology and adolescent medicine in the department of pediatrics at the University of Louisville School of Medicine and Kosair Children’s Hospital in Louisville, Ky.
Although women may take soy supplements as a natural way to replace estrogen and combat post-menopausal bone loss, they aren't appropriate for bone loss that can occur in children with arthritis. Furthermore, estrogens can have negative effects on prepubertal children, he says.
The most dangerous therapy, however, is any one that is used to the exclusion of therapies prescribed by the doctor. If not treated properly, arthritis can cause permanent damage. Forgoing medications proven to help control arthritis with the hope or belief that an unproven therapy is all you need can waste precious time, says Dr. Szer.
Fortunately, among children seeing a pediatric rheumatologist, that problem isn’t too common, Dr. Szer suspects. A 2004 Canadian study supports her suspicion. It showed that while the use of complementary therapies was common in kids with arthritis, their use was not related to any decrease in adherence to conventional medical treatment.
“I think most families seeing pediatric rheumatologists don’t want to interfere with the medical management of their child’s disease,” Dr. Szer says. “Families are doing everything possible and looking at these alternatives because they only want the best for the child.”
Talking With Your Doctor
For many families, like the Zicklers, using complementary therapies can provide an increased sense of control over a disease characterized by an out of control immune system. Increasingly, such therapies are being studied, some with promising results, says Dr. Schikler, who is particularly interested in recent developments with fish oil supplements.
“In studies of fish oils in treating inflammatory arthritis, it certainly appears that it may have benefit with fewer potential side effects than nonsteroidal anti-inflammatory drugs,” he says. So far fish oils have been tested in adult RA, not in children. In fact, few complementary or alternative therapies have been studied in children. But Dr. Schikler keeps an open mind. “There are a lot of things that may be of value,” he says.
Drs. Schikler and Szer both encourage their patients’ families to talk to their doctors about any therapies their children have used or are currently using.
While families may be concerned about challenging their doctor’s authority or fear that their doctor will be judgmental about their choice of added therapies, Dr. Szer says doctors are becoming open to discussing alternatives with their patients.
“We know that if we are judgmental, the family just may use them in secret,” says Dr. Szer. “Our goal is to talk with families about the treatments they choose and to make it as safe as possible for the recipients.”
How to Ask the Doctor
Some families find it difficult to broach the subject of complementary therapies with their child’s doctor. The following fill-in-the-blank questions may help get the conversation going.
“I was reading about ________. (Or, I’ve heard that _____________.) Do you think it would be beneficial for my child?”
“Is there anything outside the medicine and treatment we’re already trying that can help symptoms?”
“How do you feel about using _______________ to treat pain (or inflammation, stiffness, fatigue, stunted bone growth, etc.)?”