Multiple sclerosis (MS)
Treatment & Care
At Children’s Hospital Boston, 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 Programat Children’s Hospital Boston 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 counselingcan 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.
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.
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.
These organizations may also be helpful to you:
Please note that neither Children’s Hospital Boston 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 here. You can search for clinical studies at Children’s here.