What is Myelin?
Myelin is the fatty protective coating (sheath) on nerve cells similar to the insulation on an electrical wire. The myelin helps conduct nerve impulses that send messages between the brain and the body.

What is Demyelination?
Demyelination is the process of losing some of the myelin around the nerves. When demyelination occurs, it can slow or block signals traveling along the nerves between the brain and the body and can result in symptoms such as impaired vision, movement, balance, speech and cognitive ability.

Acquired Demyelinating Conditions include:
• Multiple Sclerosis
• Acute Disseminated Encephalomyelitis (ADEM)
• Transverse Myelitis
• Optic Neuritis
• Neuromyelitis Optica (Devic's disease)

What is Multiple Sclerosis?
Multiple sclerosis (MS) means “many scars” and is a condition that affects the central nervous system (brain and spinal cord). In MS, the protective myelin coating (sheath) on neural cells in the brain and spinal cord is damaged and develops scars which can slow or block signals from the brain to other parts of the body. Symptoms of MS can include: difficulties with vision, impaired movement, balance, speech, dizziness, numbness and fatigue.

While there is no known cure for MS at this time, there are many drug therapies available that can help reduce symptoms and slow progression of the disease.

MS in children: Although MS is often considered an "adult" disease, as many as 10,000-15,000 American children may have multiple sclerosis. Up to five times that number may experience a single episode of demyelination also known as Clinically Isolated Syndrome (“CIS”) affecting the brain, spinal cord, or optic nerves. Early onset of MS (before age 18) is usually reported as 2-5% of the total number of MS patients which is presently more than 400,000 in the U.S. and over 1 million worldwide.

Western New York has one of the highest prevalence rates of Multiple Sclerosis in the United States. For adult MS, the incidence rate in the United States is 50 cases per 100,000 people. In Western New York, the adult MS incidence rate is 160 cases per 100,000 people.

Symptoms
Symptoms of MS may include: visual problems, loss of balance, dizziness, difficulty concentrating or remembering, numbness and/or fatigue. The symptoms differ from person to person but are generally similar in children and adults. For children, these symptoms may affect their ability to perform in school. Many of the symptoms of MS are “invisible” – most children with MS do not look or act differently than children without the condition. Symptoms may vary in intensity and may come and go. If the symptoms present for more than 24 hours, a consultation should be scheduled.

Diagnosing MS in Children
The symptoms of MS can be similar to other neurological conditions. Because the symptoms may come and go, diagnosis may be difficult. In addition, there is no single test to diagnose the disease. At our clinic, we take a comprehensive approach to the evaluation, diagnosis and treatment of MS. On a first visit, a child will typically go through a physical, neurological and cognitive evaluation. The neurological evaluation will be performed by a pediatric neurologist as well as an MS specialist. If needed, additional tests may be performed including blood work and Magnetic Resonance Imaging (MRI). Repeat MRIs to monitor disease activity are oftentimes the best way to confirm the final diagnosis of MS.

Importance of Early Detection and Treatment
The earlier MS is diagnosed, the earlier we can begin treatment, slow the progression of the disease and reduce the chances that a child will become severely disabled from MS. Since MS may hinder a child’s cognitive ability to read and remember, earlier diagnosis and treatment will help him/her get the support needed to promote his/her cognitive and emotional development and minimize the impact of illness.

Treatment and Therapy Can Reduce Symptoms of MS
There are many treatments and therapies available today to help reduce symptoms and slow the progression of MS. Children with MS are often treated with the same medications as adults. Currently, there is no standard treatment protocol for MS in children. At our clinic, once a treatment is planned, the patient is monitored for his or her response. The treatment may be adjusted for optimal results and improved tolerance.

Special Considerations in Children with MS
Children are at different emotional and developmental stages than adults and people should be sensitive to their unique needs. Children with MS may not be performing well in school or have more difficulty learning or playing than their peers. In addition, children may be subject to “teasing” and may not have the emotional maturity to understand or cope with the frustrations the disease may bring. It is important that children have access to the care and emotional support they need to help them live well with MS. It is critical that the child and their loved ones as well as teachers, caregivers and classmates have at least some understanding of MS. Since MS is much rarer in children than it is in adults, children initially diagnosed with MS may not know any other children who have the condition. Organizations such as the National MS Society or the Pediatric Centers of Excellence have educational and support services available to help children connect with other children with MS and teach them more about the condition.

Hope for Children with MS
There is a lot of hope for children with MS today. Treatment options available can reduce many of the symptoms of MS and help slow the progression of the disease. New research and technology such as high-resolution MRIs have also made major leaps in how we can monitor and measure the effectiveness of a particular treatment and give us a more accurate picture of the disease status. New relaxation therapies and activities such as horseback riding and swimming are encouraged to help children have fun, build confidence and manage the physical effects of MS. Increasing awareness of Pediatric MS will help promote a better general understanding and treatment of MS and will hopefully ignite more interest in researching and finding a cure for this disabling disease. With the support of the National Multiple Sclerosis Society and network of Pediatric Centers of Excellence, it is an increasingly hopeful time for children with MS.