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There are many ways you can help children and their families get the care they need.
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:
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.
Do steroids have side effects?
Most children tolerate the steroids very well, but some children may experience:
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.
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.
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.
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:
Boston 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.
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.
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 Boston Children's Neurology Department.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”