Although the Rady Children’s Hospital-San Diego Division of Neurology has cared for children living with multiple sclerosis for years, we recently took a significant step in increasing patient access to comprehensive, leading-edge care for this complex autoimmune condition: opening the all-new Pediatric Multiple Sclerosis Center. Under the expert purview of Director Jennifer Graves, MD, PhD, MAS, the center will serve as a hub for compassionate, individualized care for patients and support for the entire patient family, as well as a key connector to some of the most forward-thinking research happening in the world of pediatric MS. Learn more about what inspired the clinic, its offerings and the future of pediatric MS care from Dr. Graves herself in the Q&A below.
What is MS, and what are some of its common symptoms? Do symptoms vary from person to person?
Multiple sclerosis is an autoimmune disease of the central nervous system that is triggered by both genetic and environmental risk factors. MS affects the brain, spinal cord and the optic nerves. Symptoms range from numbness or weakness in the limbs to vision loss or trouble with bowel and bladder function. Everybody’s experience with MS is a little different, with some individuals having mild disease and others more severe disease.
How is MS diagnosed?
We typically diagnose MS based on a combination of clinical symptoms and findings, as well magnetic resonance imaging of the brain and spinal cord. Sometimes we also need to test for factors in the blood and cerebrospinal fluid.
How prevalent is MS in kids? How many kids in our immediate area will this center be able to serve?
There are nearly a million people living with MS in the United States. Of all of these cases, about 5 percent had onset during childhood. Between 50 and 100 children with pediatric MS or related diseases are expected to be living in the city of San Diego, and several hundred within the larger catchment of Rady Children’s Hospital.
What led you to initiating the Pediatric MS Center?
I was previously co-director of the UCSF Pediatric MS Center. There I noticed that many children with pediatric MS from Southern California were still flying to San Francisco for specialty care. When I moved my MS program to UC San Diego, it was critical to fill this clinical need for specialty pediatric MS care in the San Diego region. Children with MS have unique needs compared to adults, and it was important to establish a clinic in a pediatric environment.
What are some of your primary goals now that the center is up and running?
In addition to providing specialty clinic appointments, we are cultivating a multidisciplinary team to care for all of our patient’s needs, from social work and school support to symptom management. We are developing a program to foster physical and mental wellness as well as health care self-advocacy in these young patients with MS. I am also a trained neuro-ophthalmologist, and we are developing vision testing resources for these patients. As a scientific member of the U.S. Network of Pediatric MS Centers, we will also be participating in exciting research projects that will address focal points including the identification of new disease risk factors and the development of new treatment options.
How is MS managed in pediatric patients? Specifically, what does a common treatment plan entail?
Treatment has three important components: 1) Disease-modification therapies, which typically regulate the immune system function to prevent further MS activity; 2) Symptom management (pain, fatigue, weakness and stiffness therapies); and 3) Wellness promotion through exercise, diet and lifestyle modifications.
What are some activities, strategies, etc. patients can use to minimize flares?
Today’s immune-based, disease-modifying therapies are designed to limit the acute attacks of MS and prevent further damage to the brain, spinal cord or optic nerves.
How will the center support patients and their loved ones beyond the necessary health care?
We plan to hold annual family days, inviting patients, their parents and their siblings to learn more about MS and how to promote wellness for patients and caregivers. The arts will be incorporated into these family events. There are U.S. annual summer camps for adolescents with MS, for which our patients can apply to attend. We can also provide parent and peer mentors for families who are facing a new MS diagnosis, as well as access to monthly calls for patients or families. Psychosocial wellness will be an important component of every patient visit.
What would you say to a child who has just been diagnosed with MS, and to their loved ones?
We are your partners for living with MS. It will be our job to try to keep the MS as quiet as possible and allow you to still be a kid and chase your dreams. We are at an exciting time for MS care, with many high-quality therapies available and many more on the way. We will be there for comprehensive care and support throughout your journey with MS.