Children with MS face uncertainty

Chicago Tribune

Tiffany Jones trembled as she stood before her classmates at Hillcrest High School. It was time to present her anatomy project -- and reveal a closely guarded secret.

Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.

The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is -- Tiffany Jones."

Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.

"There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she said. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"

Until recently, multiple sclerosis was considered an adult illness. The medical community mostly overlooked children with MS-type symptoms.

But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable, chronic illness that strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.

As many as 10,000 U.S. children and teenagers -- some as young as 5 -- have MS; another 10,000 to 15,000 kids have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.

The youngest known patient diagnosed with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are being flooded by hormones.

Resources are scarce for these patients. With few exceptions, support groups are designed for adults. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients have been tested extensively in school-age youngsters or teens. And even now, pediatricians and family doctors often assume children can't get the disease, making misdiagnoses routine.

"Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues -- dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren B. Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.

"And pediatricians know how to treat kids but they don't understand MS or know anything about the medications."

Disease differs

Adding to the confusion, MS in youngsters is, in many ways, different from the disease in adults -- so much so that researchers aren't certain if it is the same illness or a variant.

For instance, in adults, MS overwhelmingly afflicts white people, but at younger ages far more African Americans, Asians and Latinos are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.

The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy L. Kuntz, a pediatric MS specialist at the Mayo Clinic in Rochester, Minn.

That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a pediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spacial perception.

Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which children get more often than adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.

"Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy A. Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the conditions differ.

Understanding the link between viruses and MS is one of the main goals of a new network of six pediatric MS centers established by the National MS Society late last year. Studying the origins of the disease in young people should be easier than investigating adults because kids have been exposed to fewer viruses or environmental agents, Richert said.

Improving clinical care and support services for young people is another objective for the centers, whose Midwest location is the Mayo Clinic in Rochester, Minn.

"The biggest single problem these kids have is, they don't know anyone else like them," said Maria Milazzo, a pediatric nurse practitioner at the Stony Brook MS Center.

Fear and denial

Nicole Caron was so scared after being diagnosed with MS last year at age 15 that she didn't tell any of her friends what was wrong -- or even admit the truth of her illness to herself. A basketball and soccer player, Nicole first felt numbness in her fingers, then extreme fatigue. Within a few months, she began getting excruciating headaches, blurred vision and pain behind her left eye.

The final diagnosis came after a brain scan and a spinal tap, but relief at knowing what was wrong was quickly followed by fear and denial.

"I didn't want to believe anything was wrong," said Nicole, who lives in North Attleboro, Mass., and is being treated at Massachusetts General Hospital. "I thought if I kept it to myself it would be all right. And I knew everyone at school would gossip, and I didn't want to be the center of attention."

But the more Nicole concealed her worries, the lonelier she became. "I felt like a bad person because I wasn't telling anyone the truth," she said. After a month, she began letting friends know what was going on. None of them had heard of MS.

Twice a week, Nicole had to leave school to go to doctors' appointments. Once, a teacher commented in class on her excused absences. "I started to cry, I was so upset," said Nicole, who gives herself daily injections of the drug Copaxone to help stall the progression of MS. Several weeks later, she disclosed her illness to the teacher.

For her mother, Judy Caron, the hardest part is accepting the unpredictability of MS, whose symptoms can come and go without warning. "As a parent, you always try to fix everything for your children, but with this disease you have absolutely no control," she said.

In suburban Country Club Hills, Carol Jones -- Tiffany's mom -- repeats a similar sentiment. "What's so scary about MS is, you can't tell what the future holds. You just don't know day to day what tomorrow is going to be."

Tiffany's symptoms surfaced in July 2005. After multiple doctors' visits and medical tests, a definitive diagnosis came a year later. In between, this slim dancer and pompom squad member with enormous dark eyes couldn't understand why her arms and legs were going numb or why she'd suddenly stumble or drop a cup she'd picked up from the counter.

"It makes you feel so uncertain and so afraid," said Tiffany, who started three-times-a-week injections of Rebif in November.

For support, Tiffany and her mom turned to a group of adults with MS who meet each month. "It's really helpful to know what other people go through," but many of the group members are in wheelchairs and "I was thinking one day that could be me," she said.

At school, Tiffany told only a few close friends about her illness early this fall. She wanted other classmates and teachers to know how her life had changed, but she didn't want to tell them.

An anatomy class assignment inspired her to come forward. The teacher, by coincidence, had asked her to write a report on multiple sclerosis.

Standing before her classmates, Tiffany spoke of her fear, her faith and her confusion about being on the verge of adulthood as she struggled to accept a lifelong illness.

"At times, I still feel like MS is taking over my life," she said. But "I have to tell myself to stop wondering what will become of me. I know that no matter what, I won't give up."

Copyright © 2019, Los Angeles Times
EDITION: California | U.S. & World