Dr. Emily Von Scheven: Giving young lupus patients the childhood they deserve
Childhood should be a carefree time, when kids are free to play and dream. They shouldn’t have to worry about taking their lupus medications – or wonder if their treatment might be making them sick in other ways.
Dr. Emily von Scheven has seen that worry on the faces of her young patients and their parents – and she’s working to do something about it.
As a pediatric rheumatologist and director of the Pediatric Rheumatology Division at the University of California San Francisco Benioff Children’s Hospital, she treats patients who suffer from diseases such as lupus and juvenile idiopathic arthritis. She is hopeful, but also – impatient for progress.
“What's happening in the field of pediatric lupus is that basically, we're getting better at treating children – although, it's quite a challenge still,” she says. “What we're seeing as they grow up into adulthood is that they're developing a lot of secondary complications.”
While it’s essential for pediatric lupus patients to follow their treatment regimen, all medications have potential side-effects. And daily, lifelong exposure to potent medications can take their toll on young and growing bodies – to the point of stunting skeletal growth or causing osteoporosis (reduced bone density).
About 25 percent of kids with lupus experience reduced bone density. Other complications can include atherosclerosis and malignancies. “There's new attention on these additional complications that are developing in children with lupus as they grow older,” says Dr. von Scheven.
Dr. Von Scheven examining a patient at UCSF Benioff Children’s Hospital
To help minimize secondary complications in children, she says, doctors can closely monitor the use of medications that are known to be hard on bones, such glucocorticoids or prednisone. And prescribing medications traditionally used to treat osteoporosis in adults could also help children build up bone or prevent bone loss.
Vitamin D is important to maintaining bone health, too. But because lupus patients are advised to minimize their sun exposure, children with lupus often have lower levels of vitamin D compared to healthy children of the same age. Dr. von Scheven recommends that children maintain adequate levels of vitamin D and calcium through fortified dairy products or supplementation, and that they also stay physically active. Physical activity puts positive stress on the skeleton, helping to accelerate mineral deposits in the bone.
DEXA scans are commonly used to monitor bone density in older people, and have been adapted for use in children. But it’s tricky, Dr. von Scheven explains.
“You can't just put a child into a DEXA scan and readily get an answer that's interpretable,” she says. The normal baseline for bone density in adults doesn’t apply to children’s bones, which are still developing. It is important that the DXA be performed at a center with experience evaluating children.
Developing better bone density assessments for pediatric patients – and better-tolerated treatments – continues to be an important area of research. “We are working to learn what drugs work best and what drugs have the least side effects,” she says.
With the help of the Lupus Foundation of America – and its aggressive research agenda – she looks forward to the day she can relieve parents’ worries by saying that their child’s medications are effective, gentle – and completely without side-effects.