Pediatric Multiple Sclerosis
What are the symptoms of multiple sclerosi?
Pediatric multiple sclerosis (MS) is similar to adult MS in the kinds of symptoms that occur.
MS varies from person to person so there is no 'standard' set of symptoms for MS. However, we
know that common symptoms of MS include numbness or tingling in various parts of the
body, weakness of one or more part of the body, walking, difficulties, dizziness, fatigue, visual
blurring, and occasionally double vision. Patients may also have a symptom called Lhermitte's
phenomenon, in which they feel electrical tingling or shocks down their back, arms or legs
when they bend their neck forwards. Sometimes people notice hesitancy when they try to
urinate or may find that 'when they have to go, they have to go.'
There is no way to predict which symptoms one person might develop. The usual course of MS
is to have periods of time where things are relatively stable, followed by times when, over a few
days or weeks, new symptoms occur or old symptoms worsen. This relatively rapid worsening
is known as an exacerbation (or an attack, or a relapse). In other people with MS, there may be
a tendency to progress in which symptoms gradually worsen over time (months to years).
Sensory symptoms Motor symptoms Other symptoms
(changes in sensation) (changes in motor function)
numbness weakness heat sensitivity
tingling difficulty walking fatigue
other abnormal tremor emotional changes
sensations (“pins bowel/bladder problems cognitive changes
and needles,” pain) poor coordination
visual disturbances stiffness
MS varies from patient to patient so that each individual has their own set of symptoms,
problems, and their own course. There are people who have MS so mildly that they never even
know that they have it. Of course, there are also others that have it severely. It is really a
spectrum that ranges from mild to severe. An international panel of experts developed a
classification of MS in 1999 that most neurologists use today.
Relapsing-remitting: Patients have attacks of symptoms/signs, with or without recovery, but
between attacks have no interval worsening.
Secondary progressive: This is often after a few years of relapsing-remitting MS. The pattern
changes from a relapsing pattern to progressive in between attacks, usually with fewer attacks
Primary progressive: Gradual onset from We know that there is a genetic component to
the beginning, no attacks. This seems to MS. Having a mother or father with MS
occur in the older adult age group. increases the risk of having MS to about 3% to
5% lifetime, and having an identical twin with
Progressive relapsing: This is a rare form, MS increases the risk to about 30%. However,
and begins with a progressive course, many people with MS have no close family
while later developing attacks. members with the disease.
Fulminant: Very severe, rapidly progressive There is nothing that an individual with MS
MS. This is a rare form of MS. either did to cause the disease to happen or
can do to stop the disease from following its
Most pediatric cases of multiple sclerosis are natural course. We know that emotional
of the relapsing-remitting variety. Some stress may increase the symptoms of MS. We
children do well, with long periods of time also know that attacks of MS are more likely
between relapses. Some seem to have a more after infections. There does not seem to be
rapidly progressive course. any association with physical trauma or
surgical procedures and MS, nor do these
What causes or risk factors are associated seem to make MS worse.
with multiple sclerosis?
There has been extensive research on MS over How is MS diagnosed? What tests are used?
the past 50 years. While we still do not know Multiple sclerosis is often difficult to
the cause of MS, we do know that it is an diagnose. This is because there is no single
inflammatory disorder of the central nervous test or finding on the examination that makes
system that occurs in people with a tendency the diagnosis and because the disorder varies
to such a problem. We know that about from person to person. In most cases there is
350,000 people in the United States have MS, a history of neurological symptoms that come
about one in a thousand people. We know and go over years. The neurological
that it is more common further north and examination may show changes that suggest
south of the equator, though we are still problems with the spinal cord or brain. The
unsure why this is. MRI may show areas of abnormality that
suggest MS, though the MRI in itself does not
Females tend to get MS about 3 times as often 'make the diagnosis.' Spinal fluid testing may
as males, a rate which is similar to other show that the immune system is active in and
immune diseases. In children, this ratio may around the brain and spinal cord, supporting
be even higher, with most of the patients the diagnosis. Evoked potentials may assist in
being female. Girls with MS are more likely to diagnosis. All of these need to be put together
have initially sensory symptoms (e.g., by the physician to determine if MS is the
numbness and tingling) than boys. In actual diagnosis.
addition, girls tend to recover more from
their initial episode of MS than boys do. Even when all the tests are done, some people
cannot be diagnosed for years after the
MS is more common in Caucasians, but can beginning of symptoms. An international
occur in other populations. It is not panel of MS experts recently revised the ways
contagious nor is it infectious. There may be that MS is diagnosed, providing a framework
a link with reduced vitamin D levels and for clinicians to use in making the diagnosis.
perhaps with decreased sun exposure. In These new diagnostic criteria (The McDonald
children with MS, there may be an increased criteria) allow the diagnosis of MS if MRI
link with exposure to Epstein-Barr virus. Most scanning shows new lesions forming over
people with MS are diagnosed after the age of time, making even earlier diagnosis possible.
18. Only about 3% to 5% of all MS patients Even with these advances, there are some
have symptoms beginning in childhood. people where the diagnosis may be uncertain
for years, due to the complexity and variation the patient's specific needs. In addition to
of MS. elements recommended by each member of
the Mellen Center team, a care plan also may
In the pediatric age group, diagnosis is even include specific components requested by the
more complex than for adults. This is because patient, family members or a family doctor.
there are a large number of disorders that
occur in childhood that may mimic MS. For Follow-up visits are scheduled with one of the
example, acute disseminated clinical nurse specialists or physician
encephalomyelitis (ADEM) is more common in assistants who will evaluate the current
childhood and may be confused with MS. medical status and discuss treatment plans
Treatment for this disorder is different from and options with the patietn and one of the
MS in that ADEM is usually a one-time illness, Mellen Center physicians. Additional
and does not require treatment after the initial appointments may be scheduled with a
acute episode. physical or occupational therapist, a
psychologist, or a social worker, if necessary.
There are a variety of rare diseases, some
genetic, some infectious, some due to other Team members meet regularly to discuss the
illnesses, that need to be distinguished from individual's progress and fine-tune care plans
MS. Expert evaluation of the clinical history as needed. Team meetings are an effective
and physician examination, MRI appearance, means to monitor the flare-ups and
cerebrospinal fluid, and other diagnostic remissions that are characteristic of MS. Team
testing is key to differentiating these other members help patients and their families
disorders from MS. prepare for these changes.
Factors which seem to predict a second attack
of MS in children include optic neuritis, age How is multiple sclerosis treated?
greater than 10 years, or an MRI suggestive of Disease modifying agents
MS with multiple well-defined periventricular Since the first FDA-approved medication
or subcortical lesions. became available in 1993, a total of six
medications have been FDA approved for use in
What is the Mellen Center approach to multiple sclerosis. Each of these medications in
treatment? some way alters the course of MS. Each
At the Mellen Center, patients may meet with medication is available in injection form only.
one or more members of the care team,
depending on individual needs. On the first In general, the medications reduce the
visit, patients typically meet with a frequency of exacerbations of MS, reduce the
neurologist, who is primarily responsible for amount of activity seen on MRI scanning, and
managing the patient's medical care. At future may slow progression of MS. Each medication
visits, patients will also meet with a clinical has its own side effects and risks. All of the
nurse specialist or a physician assistant who approved medications have information
will discuss any concerns about MS and offer materials to guide patient education provided
suggestions for special problems related to the by the manufacturer. In addition, the National
disease, including spasticity, pain, bowel, Multiple Sclerosis society provides
bladder or skin problems. The clinical nurse information on all of these medications at the
specialist or physician assistant works closely following website:
with the neurologist to carry out the
individual's care plan. http://www.nationalmssociety.org/site/PageServ
After a thorough medical history and complete
physical evaluation, the Mellen Center team Each of the manufacturers of these
develops an individualized care plan to meet medications supports a website that has more
detailed information about the medication: site reactions such as swelling, redness,
itching, and occasionally an atrophy of the
Interferon beta-1a weekly (Avonex®):
tissues under the skin at the injection site
http://www.avonex.com/msavProject/avonex.p causing indentation of the skin.
The interferon medications require
Interferon beta-1b every other day monitoring of blood work every three to six
(Betaseron®): months to ensure that liver function and
http://www.betaseron.com/considering/index.jsp blood counts do not change significantly.
Interferon-beta-1b may rarely cause a
Interferon beta-1a three days a week breakdown of the skin at the injection site
(Rebif®): which requires the medication to be
http://www.mslifelines.com/rebif/index.jsp stopped. All of these medications have been
used in thousands of patients over years and
Copolymer (Copaxone®): have a good safety record.
Rare side effects of the interferons include
immune inflammation of the liver, altered
Mitoxantrone (Novantrone®): kidney function, and occasionally an
increase in symptoms of depression. In
http://www.novantrone.com/patients/index.jsp general, copolymer does not have major
Natalizumab (Tysabri®): risks other than skin reactions.
http://www.tysabri.com/tysbProject/tysb.porta None of the currently available medications
l?utm_content=NowAvailable&gclid=COnkmv for MS have been tested in large studies in
y-z40CFQeWHgodiDPT6A the pediatric age group. However, the
standard agents listed above have been used
In general, one of four treatments is used as in pediatric patients with similar side effects
a first-choice medication for MS: interferon- to adult patients and apparently with
beta-1a (either in an intramuscular once a benefit. Small case series of each treatment
week dosing or in a subcutaneous three have been published. While these cannot
times a week dosing); interferon-beta-1b definitely document a clinical effect of the
(every other day subcutaneous dosing); and medications, they do seem to mirror the
copolymer (daily subcutaneous dosing). In adult response to these medications in
large research trials in patients with terms of side effects and reduction in
relapsing MS, each of these medications relapse rate. Dosing schedules vary and the
showed a similar reduction of attack specific dose of each medication at different
frequency which was the primary measure of times in childhood is unclear.
effect in these trials.
Mitoxantrone and natalizumab are powerful
Each differs in the frequency and route of medications which are usually reserved for
administration, as well as in the side effect patients with more severe MS or MS that
profile. For example, the interferons in does not respond to standard front line
general may cause flu-like symptoms (fever, agents. Both have significant side effect
chills, muscle aches, fatigue) after each profiles. Neither has been extensively tested
injection. This side effect may be treated in the pediatric population to date.
with medications such as acetaminophen or
ibuprofen, and in general tends to lessen Other medications have been used in MS
over time. Copolymer tends to give injection that are not FDA-approved at this time. For