Children's Hospital treats lots of common ailments. But it is spending time and money on less well-known illnesses, too. My associate, Beth Schwinn, recently visited a Children's clinic that is devoted to a disease that is rare, but debilitating. Her report:
Keisha is five years old, with big brown eyes and thick hair which falls in braids halfway down her back. But her head seems a little too large for her body. When she walks, it is with a stiff shuffle, a side-to-side lean of all 38 inches of her, to avoid using any joints.
This little old lady has arthritis.
Technically, she has juvenile rheumatoid arthritis (JRA), which affects half a million children nationally. At Children's Hospital, designated one of 11 regional treatment centers for the disease, Keisha has been a constant concern to doctors since she developed JRA 18 months ago. Not only are her joints unusually swollen, but the disease is also affecting her heart.
"Almost 80 percent of children with JRA will recover," says Dr. Robert Lipnick, one of only 50 pediatric rheumatologists in the country. "Our concern is that they recover with full use of their muscles and limbs, and will have been able to have as normal a childhood as possible in the meantime."
Children's opened its rheumatology clinic five years ago, and now follows more than 1,000 patients. Awareness of the disease, which is more common than diabetes in children, is growing rapidly, and a large part of the center's role is educating other health centers in the area. Children most commonly develop JRA, the cause of which is unknown, between the ages of three and eight.
Keisha goes to kindergarten every day, except for her once-a-week treatment at Children's. At recess, she must sit and watch the other children play. Both her swollen joints and heart condition prohibit her from much movement. At lunch, she lags behind her classmates on the way to the cafeteria, which is down three flights of stairs.
Physical therapy is critical to treatment of arthritis at Children's (contradicting old theory, which kept sufferers immobilized). However, Keisha's condition didn't respond to aspirin treatments, and until doctors can reduce swelling, "Exercise isn't a solution," says Dr. Lipnick.
Keisha's mother is on welfare. She was working in a bank when Keisha first became ill, and had to stop working because she was needed at the hospital often.
"I've worked off and on," says the mother. "Every time I get a job, she gets sick." Her tone is resigned, and she cradles Keisha, who is shy, with both arms. Keisha reaches up and gives her mother a kiss.
"Two months ago, Keisha was really active, in therapy, running around," said Dr. Lipnick. "But we've been reducing the amount of the drug that we give her." The steroidal drug decreases swelling but also stops growth. Keisha's weight, 38 pounds, is normal for her age, but her height is not. Of every 100 kids her age, 97 are taller than she is. Keisha's hands are knobby with arthritis. Her knees are as large as her thighs, and her ankles bulge above her feet.
For Keisha, JRA is creating a host of other problems as well. When she arrived at Children's last week for her weekly shot, she and her mother had already spent several hours in the eye clinic, where it was determined that she will need glasses. She has developed a valve problem in her heart as well.
But Keisha had suffered from serious ailments before. In the last three and a half years, she had mononucleosis, osteomyelitis (a bone infection), pneumonia (which required surgery), a viral infection which damaged heart and lungs, and a second case of pneumonia.
Keisha remains a typical five-year-old, though. She stopped hiding her face in her mother's lap, and shrieked with laughter while playing pat-a-cake with the nurse. Keisha is "the fashion plate" of the clinic, says nurse Melanie Bacon. On this day, she is wearing brand-new blue corduroys, shirt and matching socks, and wants the nurse to read her the words on her shirt: OshKoshB'Gosh.
The difficulty in treating Keisha is that most medications have serious side effects, Dr. Lipnick explains. Aspirin was ineffective; the growth-halting steroidal drugs can only be used as a temporary measure.
The next step? Gold.
Gold was found effective in treating arthritis early in the century, when doctors experimented with it as a cure for tuberculosis. "We don't really know why it works," says Dr. Patience White, director of the clinic. "Any heavy metal reduces swelling. Gold is the least toxic."
Gold is given to Keisha in solution, in minute amounts. The gold passes through the kidneys and out. Keisha will not become more valuable, or even gain an ounce, as a result of her gold shots.
The clinic at Children's has had excellent results with its approach of keeping the child "mobilized, but not damaged," in spite of JRA. Stiff though she is, Keisha has improved vastly since August, when she could not walk and had to be carried by her mother.
One danger in a child this young is the fact that she does not yet relate to pain, says Dr. White. "Overdoing activity creates swelling, which over the long term creates destruction of cartilage," she said. The staff is careful not to push Keisha to do too much.
Dr. Muhammed Khokar likes the results Children's got with his 11-year-old son, Arif, another JRA sufferer. Both mother and father are physicians, and recognized Arif's ailment within a few weeks after he began complaining of pain this past summer.
Getting effective treatment took a lot longer, Dr. Khokar said.
The first doctor the family went to see put Arif on aspirin. The second put him on a stronger anti-steroidal drug. Still, Arif continued to complain of pain. Swelling spread through all his joints, and a high fever developed.
Dr. Khokar followed conventional methodology, allowing Arif to remain immobile. Arif stayed in bed all day, crawling downstairs for meals. After a while, he didn't go downstairs at all.
Dr. Khokar had to carry his son into Children's on Oct. 1. Arif could no longer even sit up.
"A lot of our treatment consists of getting the patient to move again, of convincing them they can do it," says Dr. Lipnick. After Arif began physical therapy, Dr. Lipnick insisted that Arif walk down from his room on the third floor to the first floor clinic. "It would take him 15 minutes, and he was exhausted afterwards," he reported, "but it was important to prove to Arif that he was capable."
"The therapists did excellent work," says Dr. Khokar. "They changed his whole attitude, and mine as well."
As a physician, Dr. Khokar is impressed with the results he got at Children's. "The concept of the treatment is not difficult, but therapy and organized cooperation are. Dr. Lipnick is an excellent physician. He was very warm and courteous, and called us often to discuss Arif's progress."
Two months after his stay at Children's, Arif is back in school, and goes to physical therapy daily. His swelling is greatly reduced, and the larger muscle groups show marked improvement.
Because she has systemic JRA, which affects internal organs, Keisha can only hope for results as good. Doctors expect the gold treatment to begin working by next year. They want Keisha to start first grade next fall with others of her age.
Both Keisha and Arif's conditions were recognized early, says Dr. White, which is important to treatment. "Both Keisha and Arif are excellent patients," she said. "We expect them to do just fine." TO CONTRIBUTE TO THE CAMPAIGN:
Make a check or money order payable to Children's Hospital and mail it to Bob Levey, The Washington Post, Washington, D.C., 20071.