KidsMD Health Topics

Multiple Sclerosis (MS)

  • Overview

    At Children’s Hospital Boston, we have already helped many children cope with their multiple sclerosis (MS). Once considered to be a strictly “adult” condition, MS is now being diagnosed more often in children than in the past. MS is a disease in which the immune system attacks healthy cells and tissue in the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. MS is now being diagnosed earlier, and it’s estimated that 10 percent of patients with MS start developing symptoms before they’re 18.

    Here’s what you need to know about MS:

    • MS is a chronic “autoimmune” disorder, in which the immune system attacks healthy tissue in the central nervous system (the brain, spinal cord and optic nerves).
    • In most children with MS, symptoms start in a “relapsing-remitting” course.  This means that attacks (relapses) of symptoms go away (remit) and then come back.
    • MS can often look like similar disorders. At Children’s, we carefully evaluate children to provide an accurate diagnosis and then continue to provide follow-up care.
    • MS is not contagious.
    • MS is not considered a fatal disease and most people with MS have an average life expectancy.
    • The severity of MS symptoms varies from person to person and depends on what area of the nervous system is affected.
    • There’s no cure for MS yet. Treatment options for MS focus on controlling the immune system and help people manage symptoms.

    How Children’s approaches multiple sclerosis

    When a child or teenager has MS, the disease doesn’t just affect her body; it can influence every aspect of her life. Our team in the Pediatric Multiple Sclerosis and Related Disorders Program understands this,so we’ve designed our program to care for your whole child.

    Our program is led by Mark Gorman, MD,one of the few physicians in the country to complete formal fellowship training in both pediatric neurology and multiple sclerosis. Our team also includes a nurse, nurse practitioner, psychologist, pediatric neuropsychologist, educational consultant and a social worker, who provide ongoing support for children and families. And because MS is a chronic disease, we will help your child transition to adult specialists when he reaches adulthood.

    Multiple sclerosis: Reviewed by Mark P. Gorman, MD
    © Children’s Hospital Boston; posted in 2012

  • In-Depth

    At Children’s Hospital Boston, we understand that if your child has been diagnosed with multiple sclerosis (MS), you have a lot of questions and concerns about your child’s health and future:

    • Will he be okay?
    • What does this mean for his long-term health?
    • Will the disease affect him mentally as well as physically?

    We’ve provided answers to many questions like this here, and when you meet with our team of experts, they will be able to explain your child’s condition and treatment options in more detail.

    By learning more about the disorder and what resources are available, you are taking an important first step in helping your child cope effectively with MS.

    What is multiple sclerosis?

    • MS is an autoimmune disease, a type of disorder in which the body's immune system reacts against itself and attacks its own healthy cells and tissue. In MS, the immune system reacts against the central nervous system (CNS), which includes the brain, spinal cord and optic nerves.
    • The main target of the attack is myelin, the protective coating around nerve cells. Myelin is similar to insulation around an electrical wire. It helps nerve cells to send information from one place to another in the central nervous system.
    • Attacks on myelin produce inflammation and scars (also called plaques or lesions) throughout the CNS. The scars can slow or interrupt the flow of information along nerve cells, resulting in the symptoms of MS.

    Are there different types of MS?

    Yes, the four different subtypes of MS include:

    1. Relapsing-Remitting: relapsing-remitting MS (RRMS) is the most common form of the disease. During a relapsing-remitting course, attacks (relapses) of symptoms go away (remit) and come back later. During the time in between attacks, there are no new symptoms or worsening of the disease.
    1. Secondary-Progressive: Most children with relapsing-remitting MS eventually develop a secondary-progressive phase. In, secondary-progressive MS (SPMS), symptoms steadily get worse. Although there are no periods of remission, people will experience periods between relapses where the problems lessen.
    1. Primary-Progressive: Primary-progressive MS (PPMS) is characterized by chronic symptoms that steadily get worse over time. PPMS impairs balance, coordination and the ability to walk.
    1. Progressive-Relapsing: Progressive-relapsing MS (PRMS) is the rarest form of the disease. In this stage, symptoms steadily get worse and are accompanied by sharp, intense relapses.

    How serious is MS?

    Nearly all children with MS start in a relapsing-remitting course, which means that they experience attacks (relapses) of symptoms that go away (remit) on their own or with treatment. During the time in between attacks, there are typically no new symptoms or worsening of the disease.

    Many people with relapsing-remitting MS eventually develop a secondary-progressive phase of the disease. In this later phase, MS progresses more steadily and often without attacks. However, it is extremely rare for this phase to start in childhood or adolescence.  In older studies, the secondary progressive phase started approximately 20 years after the onset of MS in children, but currently available treatment may delay this phase even further.

    The possible symptoms of MS include:

    • changes in vision
    • weakness
    • numbness and/or tingling
    • loss of balance
    • changes in bladder or bowel function
    • fatigue

    Fortunately, most people only develop a few of these symptoms over the course of their MS. Many symptoms that a person experiences will only be present during attacks and go away with treatment and time.

    Causes

    What causes MS?

    The exact reason that some children’s immune systems begin attacking their own bodies is still a mystery. But we do know that autoimmune diseases are not contagious, and they don’t appear to be caused by any one thing in particular. Instead, scientists believe there’s a multi-step process at work: 

    • Heredity: A child inherits certain genes from her parents that make her susceptible to a particular disease.
    • Environmental factors: The disease doesn’t actually reveal itself until it’s “triggered” by something—an infection, say, or exposure to certain toxins or drugs.

    Researchers are working to discover which genes are involved and how they interact. They are also investigating a number of potential environmental and hormonal triggers in order to bring us closer to one day curing these diseases.

    Who’s at risk?

    Although researchers don’t fully understand what causes certain people to develop MS, a combination of certain environment and genetic factors can increase one’s risk.

    MS is most common in:

    • Females
    • Caucasians
    • People who are 20 or older.
    • People who have a parent or sibling with MS.
    • People who live in northern latitudes with temperate conditions, such as the United States, Europe, New Zealand and Australia.

    Signs and Symptoms

    How does MS affect children mentally and physically?

    MS causes a person’s immune system to attack nerves in the brain and spinal cord. These attacks cause scarring on myelin, which is the protective coating surrounding the nerves. This scarring makes it difficult for the brain to send signals to other parts of the body. The mental and physical symptoms of MS occur as a result of the scarring on the myelin sheath. However, each person’s symptoms will vary depending on the specific location where the scarring occurs.

    Cognitive and Emotional

    Cognitive and emotional issues that occur as a result of MS are just as important as the physical symptoms. 

    Cognitively:

    Cognition refers to the way the brain is able to function and carry out tasks. About 50 percent of people with MS develop cognitive impairments. Cognitive symptoms occur when scar tissue builds up in the areas of the brain responsible for information processing. This scarring, or “sclerosis”, makes it difficult for the nerves to deliver electric signals. 

    These cognitive changes, which are usually mild, include:

    • difficulty with concentration
    • difficulty processing and remembering information
    • poor judgment
    • short attention span

    If these cognitive symptoms are affecting your child’s school performance, it’s important to discuss this with her teacher and the medical team at Children's.

    With your permission, our medical team can work with your child's school to make any changes to help address academic problems. These may include changes in the academic schedule, modifications in taking tests or asking for preferential seating in the classroom. 

    Emotionally:

    People with MS also experience symptoms that are unrelated to cognition. Emotional symptoms are a common reaction to the stress of living with a chronic, unpredictable illness. Every child will have a different way of expressing these emotions, but here are some common signs to watch for:

    • sudden increase or decrease in appetite
    • changes in sleeping patterns
    • low energy
    • irritability

    If you observe these warning signs in your child, it’s important to let your pediatrician or neurologist know right away.

    Physical

    The physical symptoms of MS vary from person to person. Usually these symptoms come and go unpredictably. The times when a person has symptoms of multiple sclerosis are called episodes or MS attacks. The episodes may last for a few days or weeks at a time.

    Early symptoms:

    The early physical symptoms of MS, which occur around the time a person reaches age 20, often include:

    • vague feelings of weakness and clumsiness
    • exhaustion
    • blurry vision
    • numbness
    • “pins-and-needles” tingling

    Other MS symptoms:

    Other possible physical symptoms of MS include:

    • double vision
    • weakness of the arms and legs
    • muscle stiffness
    • dizziness
    • loss of bladder control
    • muscle loss

    What is the Uthoff phenomenon?

    The Uthoff phenomenon refers to symptoms that occur when a child becomes overheated (for example: through exercise, weather or a hot shower)

    This worsening of symptoms brought on by an increase in body temperature is considered to be a “pseudo” (not real) attack. The symptoms are pseudo because they do not cause new lesions to show on an MRI.  

    It’s important to communicate closely with your child's pediatrician and neurologist about any symptoms that you are concerned about.

    Will my child be OK?

    When your child is diagnosed with MS, you may worry about what’s in store for her future. Remember that having MS doesn’t affect how long a person lives. Most people with the disease live long and healthy lives. By learning about the effects of MS now, you will be prepared for any situation that may arise later on.

    Since the symptoms of MS vary so much from person to person, it’s impossible to predict exactly how your child will be affected in the future. It’s likely that she will go through periods where her symptoms get better (remission) and then get worse (relapse). Long-term medication and psychological counseling will be tools that will maintain a high quality of life.

    Even though doctors can’t predict exactly what will happen, they can develop a treatment plan that ensures the best possible outcome

    What is the long-term outlook for my child?

    It’s hard to predict what the exact outcome will be for any one person with MS. However, it’s important to know that MS doesn’t shorten a person’s lifespan and most children with MS are able to lead full lives and achieve their goals. Starting a treatment plan early is key to slowing down the disease’s progression.

    Questions to ask your doctor

    You probably have a lot of questions on your mind before meeting with your child’s doctor. At the appointment, it can be easy to be overwhelmed with information and forget the questions you wanted to ask.

    A lot of parents find it helpful to jot down questions beforehand. That way, when you talk to your child’s clinician, you can be sure that all your concerns are addressed. Remember that physicians are open to learning from families too. Attend conferences, read up on updated materials and don’t be afraid to share what you have learned. 

    Some questions you might ask include:

    • What kind of experience do you have in treating children with MS?
    • How should I talk to my child about her condition and the long-term outlook?
    • How should I explain my child’s condition to others?
    • Will my child need to take medication?
    • Do I need to make any other changes to my child’s home and school routines?
    • What other resources can you point me to for more information?
    • If I have other children, will they be at risk?
  • Tests

    At Children’s Hospital Boston, we know that an early and accurate diagnosis of your child’s multiple sclerosis (MS) is the first step to effective treatment.

    Diagnosing MS often presents a special challenge for physicians, since the earliest symptoms are nonspecific and can be found in a variety of illnesses. In addition, MS can show up in different ways in different people, and the symptoms often come and go.

    For reasons like these, getting to a diagnosis can be a long and stressful journey for many families. But it’s important to remember that the difficulties are an unfortunate part of the process, not a sign that there’s something uniquely wrong with your child. At Children’s, we have expertise in evaluating symptoms in children and providing treatment that is specifically tailored to their individual condition.

    How is a diagnosis of MS made?

    MS is diagnosed according to a set of clinical standards known as the MacDonald Criteria. The MacDonald Criteria makes use of the following diagnostic tests:

    • Neurological Exam
    • Family History
    • Blood tests to look for signs of inflammation, which occurs as a result of demyelination.
    • Spinal tap (lumbar puncture), a procedure in which your child’s doctor uses a needle to access her spinal canal and the cerebrospinal fluid that’s found floating in it. Most children have lumbar punctures with local anesthesia, meaning that they’re alert, but the area of the puncture is extremely numb.
    • Magnetic resonance imaging (MRI),which uses a combination of large magnets, radiofrequencies and a computer to produce detailed pictures of the body’s organs, bones and tissues. Doctors use MRIs to check for any signs of scarring on the brain and spinal cord.
  • At Boston Children's Hospital, we understand that if your child has multiple sclerosis (MS), you may be feeling overwhelmed, worried about her health and wondering what's in store for your family. All of the members of the Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children's Hospital are here to help.

    Throughout your child's treatment, we stay in communication with your pediatrician. And because MS is a chronic disease, once your child reaches adulthood we will help her transition to adult specialists.

    What is the treatment for MS?

    Although there is no cure for MS, there are various treatments to control and manage the physical and emotional symptoms of the disorder.

    At Children's, we treat children with a variety of drugs to:

    • treat the attacks themselves
    • prevent new attacks
    • manage any symptoms that linger between attacks

    We will watch your child's symptoms closely and consider different medication if needed. We'll make every effort to keep your child's symptoms under control so that she can avoid unnecessary hospitalizations. At the same time, we choose treatment plans carefully to minimize potential side effects.

    How are the symptoms of MS managed?

    While there's no cure for MS, doctors aim to do far better than just manage your child's symptoms. Yes, they will work to immediately relieve things like changes with vision, but they will also try and change the course of the disease process.

    Autoimmune illnesses don't tend to be “wait and see” conditions, where doctors might start with a mild medication and ramp up to stronger therapies only if that doesn't work. Instead, doctors often favor aggressive upfront treatment with an array of drugs (some of which have significant side effects, which your doctor will discuss with you in detail).

    Though essential, medication is just one part of your child's treatment program. Some children with MS may also require physical and occupational therapy, to increase their mobility and muscle strength and to learn ways to make day-to-day activities easier on their bodies. And because chronic illnesses like these can be mentally and emotionally tough to deal with, psychotherapy or counseling can be valuable in helping kids keep a positive outlook.

    What medicines are used for treating attacks of MS?

    Steroids reduce inflammation in the brain and spinal cord during attacks of MS. By reducing inflammation, steroids shorten the attacks and reduce their severity.

    • The main medication that is used is called methylprednisolone (Solu-medrol), which is a corticosteroid given by IV once a day for three to five days, or monthly.
    • Some children are given an oral steroid called prednisone for a short period of time following the IV steroids.
    • Most children improve with steroids. If there is not enough improvement, other available treatments include intravenous immunoglobulin (IVIG),  and plasma exchange.
    • If your child has symptoms such as fatigue weakness, numbness and muscle stiffness between attacks, physical and occupational therapy can help.

    Do steroids have side effects?

    Most children tolerate the steroids very well, but some children may experience:

    • Temporary moodiness or other behavioral changes.
    • Increases in blood pressure and blood sugar.
    • Irritation of the stomach lining may occur with long-term use.  A medication such as ranitidine (Zantac) will be given to prevent this stomach irritation.
    • Trouble sleeping

    What medicines are used for preventing attacks?

    Although steroids are useful during attacks and can reduce their duration and severity, they don't prevent further attacks from occurring.

    To prevent new attacks of MS, your child's doctor will prescribe one of several drugs.

    • Avonex®
    • Rebif®
    • Copaxone®
    • Gilenya®
    • Tysabri®

    The goal of all of these medications is to prevent new attacks or reduce their severity, and potentially slow the progression of the disease. The main considerations in deciding among the medications include how they are given and their side effects.

    Our neurologist or nurse practitioner will review these medication choices with you in detail in order to develop the best therapeutic plan for your child.

    How effective is medicine?

    Medication and other treatments are effective in controlling the symptoms of MS and slowing down the progression of the disease. While MS can't be cured, these interventions help improve the quality of life in people with MS. Most children with MS can live full and active lives.

    Is there a chance of a cure?

    No cure for MS has been discovered yet. However, the treatments that are available are effectively in managing symptoms and slowing down the progression of the disease.

    What will my child's long-term treatment plan look like?

    We coordinate all of your child's care, both inpatient and outpatient. If she has to be admitted to Children's, our team will follow her while she is in the hospital and visit her regularly. The nurse and nurse practitioner on our team maintain close contact with patients and families and provide support any time you have a question.

    Even after a child's physical symptoms have subsided, a lot of emotional effects may remain. The psychologist on our team can help your child deal with these, as well as with the challenge of taking medications regularly and the anxiety that may come with having to inject medications with needles.

    The psychologist can see your child on the same days that you come for your medical appointments, so your family doesn't need to make extra trips to Children's. If more frequent counseling is needed, she can help your family find a counselor in your area.

    Our social worker can also help you find any resources you need, both at Children's and in your community.

    Coping and Support

    Why do children need to be told their diagnosis of MS? 

    Parents sometimes wonder if they should delay telling their child about the diagnosis of MS. There are, however, good reasons for talking about the diagnosis openly. 

    Children are sensitive to their parents' moods and states of mind. Without an open and honest explanation of what is happening, they will use their own imaginations to fill in the blanks — and what children can imagine is almost always scarier than the reality.

    When parents can talk comfortably about diagnosis and treatment issues, children feel more secure and less afraid. They know that their parents and physicians are taking good care of them.

    For teens

    Adolescents who are faced with acute or chronic illness are more likely to experience increased concerns and fears when their illness or healthcare needs conflict with the following normal developmental issues:

    • Body image issues: Adolescents normally are focused on the physical changes occurring in their bodies. Chronic illness intensifies these concerns with fears or distortions related to their illness (such as fearing a surgical scar will interfere with physical attractiveness or the ability to wear certain clothes).
    • Developing independence: Chronic illness frequently interferes with an adolescent becoming less dependent on his or her parents. Parents of chronically ill adolescents often are more resistant to their child's efforts to act independently.
    • Relationships with peers: Chronic illness and treatment often interfere with time spent with peers or at school, which is a teenager's primary social environment. Self-esteem issues related to acceptance of one's self and concerns about acceptance by others are intensified by chronic illness and related treatment needs.

    Children's offers counseling and support services to help teens who coping with chronic illness and dealing with difficult issues like body image, developing independence and relationships with peers.

    Outside resources

    These organizations may also be helpful to you:

    Please note that neither Boston Children's Hospital nor the Pediatric Multiple Sclerosis and Related Disorders Program at Children's unreservedly endorses all of the information found at the sites listed below.

    • The National Multiple Sclerosis Society and its state chapters offer programs and services to help people with MS and their families, advocate for the needs of people with MS, facilitate professional education and fund research.
    Searching for better therapies

    Because multiple sclerosis has traditionally been recognized far more in adults than in children, there is a lot that needs to be learned about how MS affects children. Mark Gorman, MD, director of our program, is actively engaged in clinical research to learn about the disease in children and to develop new treatments.

    You can also learn more about research and innovative treatments throughout the Children's Neurology department.
  • Research & Innovation

    Searching for better therapies

    At Children’s Hospital Boston, important research on improving treatment approaches to multiple sclerosis (MS) is currently taking place.

    The Pediatric Multiple Sclerosis and Related Disorders Program at Children’s Hospital Boston is affiliated with a nationwide Network of Pediatric Multiple Sclerosis Centers (NPMSC). The NPMSC has been established by the National Multiple Sclerosis Society to conduct multi-institutional research.

    The NPMSC has established the Pediatric Multiple Sclerosis and other Demyelinating Diseases Database (PeMSDD). This database stores information collected by pediatric MS centers in order to help investigators better understand the variability, progression, and current treatment practices for demyelinating diseases in children. The ultimate goal of this research study is to better guide assesses therapeutic interventions as well as provide recommendations on pediatric multiple sclerosis patient care. The PeMSDD will also provide pilot and descriptive data necessary for hypothesis generation and study design (i.e. preliminary power analyses, recruitment projections) for future studies.

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