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Guide for Families

Parents with Kids who have MS

PEDIATRIC MULTIPLE SCLEROSIS

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

  • Blood work

  • 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.

Symptoms and Signs

The signs of MS depend on the location of the disruption of myelin or “lesions”.Initial symptoms can include:

  • optic neuritis (loss of vision which may affect one or both eyes)
  • motor weakness
  • balance problems
  • sensory disturbance
  • loss of coordination
  • bladder dysfunction
  • problems related to brainstem involvement (facial numbness, double vision).

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.

 

Disease Course

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.

 

PROGNOSTIC FACTORS 

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.

 

PSYCHOSOCIAL FEATURES

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

  • extra time to take tests, or even shorter tests
  • a quiet environment for test taking
  • notes from the teacher
  • an extra set of books so that child does not have to carry them to and from school
  • use of elevator in school
  • gym class can be modified to allow for participation as tolerated
  • Educating the school professionals that the relapsing-remitting nature of the disease may cause the child to appear fine one day and too tired to participate the next.

 

TREATMENT

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.

 

Treatment of relapses

  • The first step in the management of a relapse is thorough neurological evaluation.
  • Intravenous steroid therapy is often started with the goal of decreasing the duration of the relapse and speeding recovery of an acute relapse.Treatment regimens vary from 3 to 5 days. Some specialists may use a tapering dose of oral steroids after the IV, others do not.

Steroids may have side effects which include: irritability, insomnia, and increased appetite.These side effects will resolve after the steroids are complete.

  • Intravenous immunoglobulin (IVIgG) may be used for children who do not respond to steroidtherapy or who are unable to use steroids.
  • Plasmapheresis is another treatment that might be used for children who do not respond to steroids.This treatment is typically done in a hospital setting and involves filtering the child’s blood to remove the cells that may be causing the acute relapse.Treatments are usually given every other day for a total of 5 treatments.The child may be able to undergo the treatment on an out-patient basis.

 

Disease modifying therapies

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.

 

Currently approved therapies include (in order of their timing of FDA approval)

  • Betaseron (Interferon beta 1b) Subcutaneous injection three times weekly, with an “autojector” device
  • Avonex(interferon beta 1a) Intramuscular injection once weekly
  • Copaxone (glatiramer acetate)Subcutaneous injection daily, with an “autojector” device
  • Rebif(interferon beta 1a) subcutaneous injection three times weekly, with an “autojector” device

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.

 

Symptomatic therapy

Symptoms associate with MS vary, and treatment is based on the individual.

  • Mood.The rate of mood disorder and depression among with MS is high.If not treated, they may worsen.Antidepressant therapy and cognitive behavioral therapy are recommended.
  • Painful spasms may be treated with medications such as Baclafen and Tizanidine.These medications may be used in conjunction with exercise and physical therapy.
  • Fatigue is another very frequent problem. Fatigue is both due directly to MS as well as a consequence of the depression, sleep disturbance, and pain associated with the disease. Management includes steps to conserve energy, exercise and medication. Medications considered effective and also found to be well tolerated in children include amantadine and modafinil.

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.

 

SUMMARY

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.