Information for Parents with a Child with MS

MS in a child presents special challenges which tend to evolve and change along with the age and developmental stage of the child. However, having MS does not mean your child won’t have a full and happy childhood. In fact, most children with MS do well and grow up to lead full and productive lives as adults. Resources are available to help you and your child meet the challenges of living with MS.

 

What are some resources for parents who have children with MS?

The following are resources designed for parents of a child diagnosed with MS and resources for the children themselves.

Information About Pediatric MS for Parents

  • Kids Get MS Too: A Guide for Parents Whose Child or Teen has MS. Offered by the Young Persons with MS Network (contact: childhoodms@nmss.org)
  • Students with MS and the Academic Setting: A Handbook for School Personnel. Available from the Naitonal MS Society in hardcopy (contact: childhoodms@nmss.org) or electronic format at www.nationalmssociety.org/pedsupport
  • MS Learn on Line: Pediatric MS: Partnering with Your Child’s School. Available from the National MS Society online at www.nationalmssociety.org/mslearnonline

 

Resources for children with MS

  • Keep S’Myelin—An Interactive Children’s Newsletter. Available from the National MS Society online at www.nationalmssociety.com
  • Mighty Special Kids. An activity book to help children with MS understand their disease. Available from the National MS Society by calling 1-866-KIDS-W-MS or online at www.nationalmssociety.org/mskids

 

How should I talk to my child about their condition?

Each child is different and your relationship with your child is unique. However, here are a few tips for communicating with your child about MS, including how to talk openly about the diagnosis, being prepared for how your child will react to learning about their disease, including your child in their treatment plan, and helping your child become comfortable with members of their healthcare team.

Parenting Tips

Talk openly about the diagnosis
  • It’s important to give your child accurate information about MS
  • Open and honest communication promotes trust and a feeling of safety
Be prepared for how your child will react
  • How your child reacts may depend on their age, but if you are upset or anxious, your child may be too
  • Give reassurance that things will be OK and that together, you and your child will be able to handle the challenges of MS
Involve your child in the treatment plan
  • Including your child in the decision process will help make them feel safer and more in control
  • Encourage them to learn as much as they can about MS
  • Since treatments involve injections given even when your child is feeling fine, an understanding of how MS treatment works is especially important
Help your child get comfortable with his or her doctors and care team
  • If you are calm yourself, your child will become more comfortable having an ongoing relationship with his or her doctor and different members of the care team
  • The more comfortable your child is with his or her doctor and care team, the safer and more relaxed he or she will feel
  • Teens may want to handle doctor visits by themselves: respect their privacy
Avoid being overprotective
  • Because of the nature of MS, it’s difficult to predict when your child will feel well or unwell
  • Let your kid be a kid and don’t become too overprotective

 

Where can I find doctors who are experts in childhood MS?

The US National MS Society has established a network of six Pediatric MS Centers of Excellence, located regionally throughout the country. At each of these Centers, you can find health professionals (physicians, nurses, social workers, occupational therapists, speech/language pathologists, psychiatrists, and psychologists) who are specialists in providing care for children who have MS. The goal of each Center is to provide an expert team that addresses the patient’s needs in the most comprehensive manner possible.

The National MS Society Pediatric MS Centers of Excellence are committed to providing services to patients and their families, regardless of income level. Financial assistance to cover travel and hotel accommodations is available, to help families take advantage of services at these institutions regardless of their ability to pay or their distance away from a center.

Information about the centers is available at www.nationalalmssociety.org/PediatricMS or by calling the National MS Society at 1-800-344-4867 or visiting the National MS Society website.

Written by: Jonathan Simmons | Last reviewed: May 2015.
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