When a child or teenager has multiple sclerosis (MS) or one of the related disorders, the disease doesn’t just affect her body: It can influence every aspect of her life. She may miss a lot of school, she has to cope with her diagnosis and she needs to deal with managing the disease at home.
Our team in the Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s Hospital understand this, so we’ve designed our program to care for your whole child.
Supporting your child and family
We coordinate all of your child’s care, both inpatient and outpatient. If she has to be admitted to Boston 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 Boston Children’s and in your community.
Helping your child succeed in school
For a child or teenager with MS and related diseases, a special concern is making sure that she has the resources she needs to learn. Sometimes children with these conditions can experience cognitive problems such as trouble with paying attention and learning, so we are on the lookout for any difficulties your child may have.
To identify any problems, the neuropsychologist on our team can perform specialized testing. With your permission, our educational liaison can work with your child’s school to make changes that will help address the problems. These detailed assessments and recommendations can be hugely important in helping our patients succeed in school in the midst of their illness and treatment.
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 Boston Children’s Neurology department here.
You can search for clinical studies at Boston Children’s here.