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:
- 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.
- 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.
- 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.
- 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
- numbness and/or tingling
- loss of balance
- changes in bladder or bowel function
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.
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:
- 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.
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.
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
If you observe these warning signs in your child, it’s important to let your pediatrician or neurologist know right away.
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.
The early physical symptoms of MS, which occur around the time a person reaches age 20, often include:
- vague feelings of weakness and clumsiness
- blurry vision
- “pins-and-needles” tingling
Other MS symptoms:
Other possible physical symptoms of MS include:
- double vision
- weakness of the arms and legs
- muscle stiffness
- 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?