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Multiple sclerosis (MS) is a disorder of the central nervous system.Children and adolescents can develop MS although usually it affects young and middle aged adults.An estimated 2-3 % of patients with MS are under age 18. It is rarely seen in the very young child, and percentages increase with age.MS is now a treatable disease, with medications first introduced in 1993.
Multiple sclerosis is defined as multiple episodes or “attacks” of CNS demyelination dysfunction over time.By definition, these events last at least 24 hours.These attacks are caused by the disruption of the myelin coating of the nerves of the brain and spinal cord.(If the nervous system is thought of as a telephone cord, we can picture the disruption of the myelin as a break in the plastic coating of the cord.This break may interrupt the signals being transmitted through the wire.In the case of the telephone, it may interrupt the conversation.In MS, it may cause an “attack”.)Often, the myelin is repaired, and the symptoms will disappear or “remit”.When another episode occurs, we can call it a “relapse”.
The diagnosis of MS is based on the clinical events.There are tests that are used to aid in the diagnosis.These include:
Magnetic Resonance Imaging (MRI)
Spinal fluid (Lumbar Puncture) analysis
Evoked potentials, or tests of nerve and muscle function (including Visual Evoked Potential-VEP, Brainstem Auditory Evoked Response- BAER, Somatosensory Evoked Potential-SSEP, Nerve Conduction Velocity-NCV).
These tests will help to rule out other diseases, and confirm the diagnosis of MS.
The signs of MS depend on the location of the disruption of myelin or “lesions”.Initial symptoms can include:
For the younger children, especially those under six, seizures, a change in mental status , and a combination of the other symptoms may be seen.The MRI findings in the younger child may be different from what is seen in adults.
Most of the cases of Pediatric MS (93-98%) involve the Relapsing-Remitting type of disease.There are episodes of neurologic symptoms or relapses which last at least 24 hours, and then go on to stabilize or improve.There may be residual deficits over time.
Over time (sometimes decades) most children with MS develop accumulated neurological impairments. However this progression occurs more gradually in children than in adults with the disease.
Less commonly, kids with pediatric MS can have an aggressive course and develop severe deficits during childhood
Over time, most adults and children with MS will transition from the relapsing remitting type, to gradual disease progression.This is called secondary progressive MS. During this time, patients gradually accumulate increasing deficits.
A much less common type of MS (estimated to occur in < 3%) is primary progressive MS.In this type, there are no relapses and instead, patients follow a steadily progressive course. In primary progressive MS symptoms and signs accumulate over time and relapses never occur.
It is extremely difficult to predict the disease course in any one individual child or adult with MS. Some individuals show minimal signs of the disease through-out their course and experience few relapses. Others relapse frequently and rapidly progress to requiring a wheel chair.
Most children with MS have never met another child with MS.Parents may feel isolated.Information regarding the disease and treatment may be hard to find.However there are programs for affected children and families.
It is not uncommon for children with MS to at some point have difficulty with depression or anxiety.There is therapy available to help with these problems.
School may be affected by MS as well.Severe fatigue, cognitive (thinking) dysfunction,and physical changes related to the disease (such as missed school days due to relapse, or problems like weakness or difficulty writing) can make affected kids stand out from their peers.However, most kids with MS will graduate high school and go on to college and further studies.
Modifications can be put in place within the school to enable affected children to successfully complete their education.These may include
While there are currently no medications approved for treatment of pediatric MS, there are therapies that are commonly used.
Treatment can be divided into treatment of relapses and disease modifying therapies and symptomatic treatment.
Steroids may have side effects which include: irritability, insomnia, and increased appetite.These side effects will resolve after the steroids are complete.
Disease modifying therapies are the medicines that actually work to alter the course of the disease.These treatments have been shown to be useful in relapsing remitting MS or in adults with a single relapse who are at high risk for a subsequent event.
The medications are most effective in decreasing the frequency and severity of relapses. To a lesser degree the DMTs lessen the accumulation of neurological impairments or disability.
The interferons and glatiramer acetate affect the immune system by slightly different mechanisms. However, each of these therapies have their own advantages and disadvantages, largely based on side effects and convenience.
Natilizumab (Tysabri) and mitoxantrone (Novantrone) are second line therapies which are given intravenously. They are usually prescribed when first line agents fail. Neither of these therapies are currently approved for use in children.
Symptoms associate with MS vary, and treatment is based on the individual.
Ideally the management of children with MS is multidisciplinary. In addition to a neurologist, ideally familiar with MS in children, professionals from physical therapy, neuropsychology, nursing, and psychiatry are often needed to address the multiple issues associated with the disease.A recreational program for teens with MS is available through the Teen Adventure Program. This activity helps teens meet others their age in a pleasant non-medical setting. As progress in the management of MS growsaffected individuals can expect better and more convenient treatment options.
Children and adolescents can develop MS. Teens are affected more frequently than younger children. The disease is almost always relapsing remitting at onset andtreatable. Psychosocial complications are frequent and likely result from changes related to the disease itself, as the consequences of chronic illness.
MS responds best to multidisciplinary treatment including modifying the disease course with immune modulating therapies and treating on-going symptoms such as mood disorders.
Stony Brook University Hospital
101 Nicolls Road Stony Brook, NY 11794