Understanding Multiple Sclerosis (MS) in Children and Teens

Lauren Krupp, MD, an internationally recognized expert on multiple sclerosis (MS), talks about what MS is, how to manage the condition in children and teens, and the unique resources available at Stony Brook Children’s Hospital. Dr. Krupp is Program Director of the National Pediatric Multiple Sclerosis Center at Stony Brook, which is one of only six such centers in the nation — providing the community access to highly advanced expertise.

What is MS?

MS is an acquired neurologic disease that affects the central nervous system. Approximately 400,000 individuals in the U.S. have MS. It is an autoimmune disease in which the body’s immune system attacks its own tissues. In MS, this process destroys myelin — the fatty substance that coats and protects nerve fibers in the brain and spinal cord. The most common pattern (relapsing remitting MS) involves neurologic attacks (relapses, exacerbations or flare-ups) where problems such as decreased vision in one eye, pins and needles from the waist down, or double vision develop over several days to weeks before improving. A less common pattern (primary progressive MS) involves gradual worsening, most often resulting in an inability to walk, which can occur over months to years without recovery. The majority of people develop MS between the ages of 15 and 50, but it can occasionally strike younger children. Although pediatric MS is relatively rare, it is estimated that 3% of the MS population develop symptoms before age 18.

What are the symptoms?

Persistent symptoms should be evaluated by a medical practitioner, as they could represent very early signs of MS. The types of symptoms include:

• Loss of vision in one or both eyes

• Numbness or weakness in one or more limbs

• Double vision or blurring of vision

• Tingling or numbness, electric-like sensations

• Tremor or lack of coordination or a sensation of spinning

• Problems walking due to weakness or poor balance

How is MS treated?

A comprehensive pediatric MS center can evaluate and treat a child with MS. MS is a complex, lifelong condition with no known cure, but disease-modifying therapies exist. It is important for children to be thoroughly assessed by a team of experts. We’ve seen the best long-term outcomes when treatment starts early. Treatment occurs on many levels including medication, cognitive, educational and psychological evaluations, and family support.

How does Stony Brook treat children and teens with MS?

Our National Pediatric MS Center has a multidisciplinary team known for its comprehensive approach. The program begins with a comprehensive multidisciplinary evaluation conducted over one or two days.

The evaluation includes:

A neurological assessment by a pediatric neurologist and MS specialist

• Review of medical records

• A neuropsychological evaluation and psychological assessment to evaluate the impact of MS on cognition, academic performance and emotional functioning

• An MRI may possibly be performed and evaluated with our neuro-radiologist to assess the disease

• Ophthalmology exam

• Individual psychological support for patients and their family members

• Neuropsychological evaluation

• Assistance, if needed, with school issues

• Nursing support

Once a diagnosis is made, the team develops a treatment plan, which is shared with the family, the child’s primary care physician and the local neurologist. We have access to disease modifying therapies including infusion medications. The plan may also include developing a relationship with the local healthcare providers in order to coordinate care near the home. In addition, the plan may include physical, occupational and speech therapy, counseling and more. Note that we work closely with the child’s primary care physician and local neurologist, and serve as consultants in the ongoing care of the patient. Educational materials regarding MS and its treatment are also provided. And, because of our role as National Pediatric MS Center, we have access to a worldwide network of international experts. We consult on difficult cases around the world and we are pleased to offer this high level expertise in our own community.

What other kinds of support are offered?

We understand that unlike less complex illnesses, MS can have far reaching effects on our patients and their families, not only physically, but cognitively and emotionally. Our entire team is deeply involved in clinical management, support and education for the patient and family. We are a resource for the local physician needs. We also stress continuity of care by helping our patients make the transition into the adult multiple sclerosis practice when the time comes.

Children with MS and their families can feel isolated. We work to alleviate feelings of isolation by providing a support network. We offer affected teens a unique program called Teen Adventure Camp. Campers participate in outdoor activities, such as kayaking and navigating a high ropes course. They also meet other kids their own age who face the same challenges they do. Camp is free to all participants.

Another benefit for Stony Brook patients is that as an academic medical center, we train other medical professionals in the community and around the country — which means we are current with the most up-to-date procedures and protocols. Stony Brook patients have access to many ongoing cutting-edge clinical research trials for MS — many of which have been developed right here at Stony Brook. And, as part of Stony Brook Children’s, our healthcare professionals recognize that children’s needs are different and require treatments and physician expertise tailored to the child.

For more information about Stony Brook’s National Pediatric Multiple Sclerosis Center, call (631) 444-7802 or visit us at neuro.stonybrookmedicine.edu


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All health and health-related information contained in this article is intended to be general and/or educational in nature and should not be used as a substitute for a visit with a healthcare professional for help, diagnosis, guidance, and treatment. The information is intended to offer only general information for individuals to discuss with their healthcare provider. It is not intended to constitute a medical diagnosis or treatment or endorsement of any particular test, treatment, procedure, service, etc. Reliance on information provided is at the user's risk. Your healthcare provider should be consulted regarding matters concerning the medical condition, treatment, and needs of you and your family.

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