By Jeanne Nilsen Hughes
Late last year, Kirstiene Catapusan, 15, was in an exciting phase of her life - she and her mother had recently immigrated to the East Bay from the Philippines to join her grandmother and other family members.
She was doing well in her new school in Pittsburg and perfecting her skills in her favorite sport, basketball.
But starting in November 2005 and progressing into early 2006, Catapusan started to notice alarming feelings of numbness and heaviness on her right side. Trips to local emergency departments provided no answers, and she was finally hospitalized when she suddenly couldn't walk and had trouble speaking.
Diagnostic tests finally provided the answers the family had been searching for: There were lesions on her brain, indicating that she was among the rare group of children who develop multiple sclerosis (MS).
"I didn't know about MS before," Catapusan said. "They said, 'You're too young.'"
In fact, she wasn't too young. Although MS was once thought to be an adult disease, experts, including UCSF neurologists, know that children can also get the chronic condition that affects the brain and the spinal cord.
MS occurs when the body's immune system attacks the myelin, which is the material that insulates and protects nerves. The scars that result from myelin damage prevent information from being passed through the nerves, causing symptoms that vary, depending on where the scar has formed.
Acute attacks on the myelin, which can produce severe symptoms, are treated with steroids. When the disease is active, interferon is used to prevent future attacks.
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Kirstiene Catapusan |
Fortunately for Catapusan, UCSF Children's Hospital, with the sponsorship of the National Multiple Sclerosis Society, recently established one of only six centers nationwide for care of children and adolescents with MS and other demyelinating diseases. Among the 400,000 cases of MS diagnosed in the United States, experts estimate that 10,000 are pediatric cases, though there may be many others that are missed.
New Pediatric MS Center
Because treating kids with MS is a very new specialty, the team at UCSF includes both adult neurologists who have a deep understanding of MS and pediatric neurologists who are trained specifically to understand the processes of children's brains, in addition to a pediatric nurse practitioner, social worker and neuropsychologist.
"Parents say it's a relief to be able to talk to all the specialists at once," said Emmanuelle Waubant, MD, PhD, an adult neurologist on the UCSF Regional Pediatric MS Center team.
Catapusan was first seen at the UCSF pediatric MS center in February. Among the first actions of the UCSF team was confirming the MS diagnosis. Once she recovered from her relapse, it was time to choose the medication she would use on an ongoing basis to prevent future attacks.
"Since medication requires self-injections, it's very important to give kids a choice about how they want to administer it," said Catapusan's primary team member, pediatric nurse practitioner Kimberly Erlich. "We're committed to individualizing care to each patient, so their lives are as normal as possible."
After six months of treatment, Catapusan is feeling better and learning to live with her disease. The social worker and neuropsychologist from the UCSF team have worked with her and her school to formalize the help she receives, in addition to educating teachers about MS.
She will have appointments at the UCSF pediatric MS center every year, with MRI and blood tests performed every six months. Because of the bond Catapusan and her mother have formed with Erlich, she also knows she can call if she has a relapse or questions.
"You can't change the past," the teenager said about her experience with MS so far. "You can only change the future and stay strong and positive."
In that vein, she has gone back to playing basketball and dreams of going to nursing school one day. In June, Catapusan attended the first UCSF Regional Pediatric MS Center's patient day, when she met other kids and adolescents, as well as adult patients, who are living with the disease. Her mother and aunt attended lectures to learn about the latest advances in pediatric MS treatment.
For more information about MS in children, please contact the UCSF Regional Pediatric MS Center, Department of Neurology, at 415/353-3939.
Photo/Christine Jegan
Links:
Honors for Pediatric MS Center
Multiple Sclerosis in Children is More Common Than Thought
UCSF Opens Pediatric MS Center
UCSF Children's Hospital
