Information for Parents of a Child with MS
Reviewed by: HU Medical Review Board | Last reviewed: January 2020 | Last updated: December 2020
Pediatric MS can bring many challenges. These may evolve and change along with a child’s age or developmental stage. 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.1 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. There are also resources for the children themselves.
Information about pediatric MS for parents
- National Multiples Sclerosis Society: Provides information on pediatric MS, care centers, and a directory of doctors. Also helps families affected by pediatric MS connect with one another.
- Pediatric Multiple Sclerosis Alliance (PMSA): Has information, a resource center, care directory, and links to financial support.
- Kids Get MS Too: A Guide for Parents Whose Child or Teen has MS: A comprehensive guide to navigating pediatric MS with your child.
- Students with MS and the Academic Setting: A Handbook for School Personnel: A guide for navigating pediatric MS in the academic setting.
- Toll-free information helpline through the Multiple Sclerosis Association of America (MSAA) at 1-800-532-7667, ext 154. The helpline can also be reached through chat on the MSAA’s website.
Resources for children with MS
- Keep S’Myelin Activity Book for kids: A hard copy can be obtained by calling the National MS Society at 1-800-344-4867.
- Oscar the MS Monkey: Online blog for children with MS that follows Oscar the stuffed monkey as he visits other children with MS.
- Digesting Science: Interactive website teaching children about MS.
- National Multiples Sclerosis Society: Provides information on pediatric MS and helps provide community for children and teens with MS.
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.1,2
Talking openly about the diagnosis
A great first step is to give your child accurate information about MS and to initiate open and honest communication. This kind of communication promotes trust and a feeling of safety.
Being prepared for how your child will react
How your child reacts may depend on their age or personality, but if you are upset or anxious, your child may be too. Giving reassurance that things will be okay, and that together, you will be able to handle the challenges of MS may help keep them at ease.
Involving your child in the treatment plan
Including your child in the decision process will help make them feel safer and more in control. Since some treatments involve injections given even when your child is feeling fine, an understanding of how MS treatment works is especially important. Encouraging your child to learn as much as they can about MS from age-appropriate resources can be helpful in long-term management.
Helping your child get comfortable with their care team
If you are comfortable yourself, your child will become more comfortable having an ongoing relationship with their doctor and different members of the care team. The more comfortable your child is with their care team, the safer and more relaxed they will feel. Teens may want to handle doctor visits by themselves. It’s okay to respect their privacy for maintenance visits, especially if they have a strong grasp on what’s going on.
Avoiding the urge to overprotect
Because of the nature of MS, it’s difficult to predict when your child will feel well or unwell. It is understandable to want to protect them at all costs, however, it’s important to give them their own independence. Letting your child be a child and giving them the space to develop a strong social support on their own may help them thrive in ways you weren’t expecting.
Where can I find doctors who are experts in pediatric MS?
The US National MS Society has a comprehensive directory of providers and healthcare centers specializing in pediatric MS. At healthcare facilities deemed “Centers for Comprehensive Care” you can find many different health professionals to add to your team (physicians, nurses, social workers, occupational therapists, speech/language pathologists, psychiatrists, and psychologists). The goal of each Center is to provide an expert team that addresses the patient’s needs in the most comprehensive manner possible. If there are no Centers for Comprehensive Care near you, you can still search the online directory to find healthcare providers in your area who are ready and equipped to help.
Information about the centers is available at can be found at the National MS Society’s website or by calling the National MS Society at 1-800-344-4867.