When you’re talking about multiple sclerosis, children usually don’t come up in the conversation. After all, most people who have this progressive neurological disease are diagnosed between the ages of 20 and 50. But MS can and does strike in childhood. In fact, as many as 10% of MS patients first have symptoms before age 16, according to a study in BMC Neurology.
Still, there are only about 8,000 to 10,000 kids with MS in U.S., so it’s no surprise that families can feel isolated and alone after diagnosis. The super reassuring news? You don’t have to feel that way for long. There’s a whole network out there for you to tap into when you’re ready. And trust us, you will be ready sooner that you think.
“You and your child need to connect with people who understand what you’re going through—even if they are halfway around the country, because a local friend may not understand,” says Branda Kenney, of Davenport, IA, whose daughter Keegan, 18 has MS.
Here’s where to start.
The National MS Society is a comprehensive resource for all things MS. Keep S’mylein, a 28-page activity book helps children and their parents learn and talk about MS together. It’s filled with stories, interviews, games, and activities on a variety of topics related to MS and a special separate eight-page section just for parents.
While NMSS no longer publishes its newsletter for kids, you can read past issues online and download their parent handbook "Kids Get MS Too." Plus, you can find local chapters and search the calendar of programs and events, including camps for kids and teens, by zip code. You can also encourage your older kid to check out the society's private Facebook group for teens.
And in case you haven't connected with one yet: NMSS established a national network of pediatric MS centers in 2006 to provide comprehensive evaluation and care to children and teens with MS and related disorders. Visit The United States Network of Pediatric Multiple Sclerosis Centers for locations and to see what's offered.
Looking for someone who already knows exactly where to turn and can point you in the direction you need to go? Connect with a MS Navigator from the National Multiple Sclerosis Society. They are skilled professionals who can connect you to the information, resources, support you need, as well as other families whose children are living with MS.
Emily Blosberg, now 23, created Oscar when diagnosed with MS at the age of 15 because she found it difficult to find other teens with MS. Oscar’s Buddies are adorable sock puppets given to anyone with MS who needs a little TLC and a friend.
Oscar reaches young people where they are: Facebook, Instagram, and Twitter. And it does a nice job of tailoring content to kids of different ages. The org's Facebook page has private groups for MS Warriors (aimed at kids 12 and under); MS Conquerors (geared to teens 13 to 19); and MS Champions (for those 20+).
Be sure to check out Oscar's Buddy Bash, an annual weekend getaway event at Camp Eden Wood in Eden Prairie, MN. The focus is on fun, sharing, learning, making connections. And each summer Oscar sponsors a Teen MS Camp at the University of Wisconsin River Falls campus.
Tweens and teens with MS may feel isolated or “different” from other kids. They may even question their own abilities. That’s where the Teen Adventure Program camp comes in. It’s designed to push the physical limits of these special campers in a safe, communal setting that gets kids with MS together to have some summer fun.
Campers go kayaking and sailing, do yoga and meditation, master a high ropes course, and more. Camp personnel are all trained to work with kids with MS—some are volunteers from the National MS Society—and a few are former campers themselves. Kids often voice their surprise (and happy relief!) to be surrounded by so many other adolescents who are facing the very same challenges and concerns.
Run by the Lourie Center for Pediatric MS at Stony Brook Medicine in Long Island, NY, the camp has offered past summer sessions in two separate five-day retreats in mid-July. It's open to all teens and tweens with MS. Some assistance with transportation may be available. For details and applications for summer 2020, check out the website above.
PMSA’s goal is to connect, advocate, and support families with children with pediatric MS. Take advantage of links to clinics and doctors, educational information, drug and treatment therapies, and events. Another special feature of PMSA is Julia’s Fund, which provides financial support to families with a child with MS. The groups also runs a private Facebook page for parents.
In addition to the public Facebook page where teens and parents can find support, the MS Foundation sponsors an educational cruise for the entire family where everyone can make new friends and learn about the disease. The four-day Alaska trip, MS Focus at Sea aboard Celebrity Solstice, includes stops in Juneau, Skagway, and Ketchikan, May 29 to June 5, 2020. MS experts are on board for educational and interactive programs, workshops, and discussion groups.
There is a ton of good information on the MSAA website, and parents can tap into vast resources like on-demand videos, articles, even links for prescription assistance programs. While most of the focus is on adults, just type “pediatric ms” into the site’s search bar to find kid-specific info.
Need more information? Check out materials from the Lending Library, which offers a comprehensive selection of books and DVDs that address disease and symptom management, wellness, personal stories from people living with MS, care-partner issues, and many other important topics. The program is free and open to everyone.
Are you a news and science junkie who wants to stay ahead of the research curve? This is the place for you. Multiple Sclerosis News Today is the only online publication that seeks to cover MS-related science and research news in a 24-hour news-cycle format for MS patients and their families. The editorial staff is composed of scientists, researchers, nurses, and journalists. Type “pediatric MS” into its search bar to discover related content. But the pub isn't only about reporting: There are a variety of forums where you can connect with others as well.
This site is dedicated to helping all people in the MS community connect via online support groups or one-on-one through its Peer Connections program, where you can search for and connect with a peer-support volunteer who has been where you are now. There are a couple of groups geared toward parents and families: Check out the “Pediatric MS Online Group for Parents” and “Family Matters,” which is for anyone whose family has been affected by MS.
All MSconnection.org support groups are led by volunteers who have completed the National MS Society’s support-group leader training. And if you need an ear right now, help is just a phone call away, 15 hours a day and seven days a week, through the MSFriends program: 1-866-673-7436.
See more helpful articles:
Helping Kids Handle the Emotional MS Rollercoaster
10 Things to Know About Kids and MS
Blazing a Path for Kids With MS