The Advice That Helped Most When My Child Was Diagnosed With MS

by Sheryl Nance-Nash Health Writer

If you’re reading this, we’re guessing one of the last things you could have imagined happening to your child has happened: They’ve been diagnosed with multiple sclerosis. And it probably wasn’t even on your list of Scary Things That Could Happen to My Kid. “We didn’t know about MS or that kids could get it,” says Brandy Spitz of Holt, MI, whose daughter Gillian, was diagnosed at 16. “When we heard it’s a lifelong, progressive disease, we felt lost. We didn’t know where to turn.”

Like anyone desperate for answers she started Googling and stumbled upon Oscar the MS Monkey, an organization that supports children and families with MS. It’s been two years since MS came into her daughter’s life, and Spitz—like all the parents and kids you’re about to hear from—has walked the path you’re just about to start. They’re here to show you the way. But before you go, take her best advice: “Reach out. Find help. The support we got from connecting with other families made all the difference for us.”

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Get Counseling for Your Child

Pediatric MS can trigger a whole roller coaster of emotions—and at time when kids are already dealing with the usual loop-de-loops that come with being a teenager. It’s hard to know how you will feel from one week to the next, and that uncertainty along with fears of having a lifelong illness can fuel depression and anxiety. Bottom line: Your child may need someone to talk to.

“Shaye sees a therapist to help her process everything she’s going through,” says Michelle Ostrowski, of Farmington, MI, whose daughter was diagnosed at 15. “Therapy has helped Shaye keep things in perspective and to accept what’s happening,” says Ostrowski.

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Put Together a Good Team

You will need a small army to guide you through the pediatric MS maze—not just a neurologist, but a therapist, physical therapist, teachers, and counselors. One way to recruit yours? Old-fashioned networking. Ostrowski says she got invaluable input and referrals from the Pediatric Multiple Sclerosis Alliance’s Facebook group for parents. And though it’s obvious, it’s worth repeating: You’ve got to feel comfortable with each one of them…no matter their credentials. “We changed doctors early on,” says Ostrowski. “I didn’t get answers to emails and didn’t feel like I was getting the attention we needed.”

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Take Care of Yourself, Too (No Excuses!)

Like your child, you may need counseling and that’s 100% ok. “It’s a lot to see your child going through what they do, and it’s long road for families,” says Mary Rensel, M.D., director of Pediatric Neurology and Wellness at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.

It’s not your imagination: Having a child with MS changes everything, says Spitz. “All of a sudden you’re uncertain about your child’s future. You don’t how fast the disease might progress. That’s hard to deal with. You have be okay with not knowing,” she says. And if you’re not, a therapist can help you get there.

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Be Proactive at Your Child’s School

MS is unpredictable. Your child could be fine one day and then need to be out of school for a couple of weeks because they are ill. You need a great relationship with your child’s teachers and administrators. The key is simple: Communicate your concerns, says Branda Kennedy of Davenport, IA, whose daughter Keegan, 17, was diagnosed three years ago. For her, it started with a phone call and setting up meetings, and now she meets regularly with school staff. Even better, teachers will reach out to her as soon as they see anything amiss like dropping test scores.

Ask the School About Accommodations

Kids with MS can experience problems with cognition, focus, and memory; having a formal plan in place can provide them with the support they need to be successful. “Keegan has an IEP (individual education plan), and now we’re working on a 504 plan that will carry through to college,” says Kennedy. In case you’re not familiar with these options, here are the basics from Understood.org:

  • An IEP is a formal plan that outlines the special education services your child will receive through high school. You child must have one of 13 qualifying disabilities.
  • A 504 outlines how the school will support a child with any disability.

Research, Research, Research

Don’t worry, you’re not the only parent who doesn’t know a lot about a disease that has changed the lives of everyone in the household. Try to channel the stress of feeling overwhelmed into something positive: Determine to learn as much as you can. “Familiarize yourself with medical terms you keep hearing,” says Kennedy. Read all the articles on pediatric MS can you find (we have a bunch to get you started.) Ask doctors plenty of questions and tap other parents in the pediatric MS community.

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Remember They’re Still Kids

And they still want to do all the kid things. So let them as much as you can. “We encourage Gillian to go out with her friends. And she does,” says Spitz. “They go to the movies and out for sushi. You don’t want to let MS be everything.” Having pediatric MS may not be a “normal” thing, but you can definitely help your child maintain their sense of normalcy simply by keeping on keeping on: family movie nights, sibling baseball games, weekend getaways...all of it.

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Be Flexible in Your Parenting

Your teen with MS will push back like any other teen. They might fight you on taking meds, getting off that (dang) game, and doing chores. All super typical. What may not be typical though is how they process your instructions. Kennedy she learned a lot about how Keegan processes information after she underwent neuropsychological testing: “I used to give her a list of chores to do, which really stressed her out.” Naturally, Kennedy had chalked that up to typical teen resistance. “I now know that she really can’t process more than one task at a time, so I changed my approach.”

Breathe

Actually, do it right now and just be for a second. Then remember that you have a child who has been amazing you in all sort of ways from the minute she was born. That’s not going to change just because MS has butted into her life. “I have to remind myself that Shaye can handle this,” says Ostrowski. “She can get through anything.” We bet your child can, too.

IEP vs. 504 plans: Understood.org. (n.d.) “The Difference Between IEPs and 504 Plans.” understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans

Sheryl Nance-Nash
Meet Our Writer
Sheryl Nance-Nash

Sheryl Nance-Nash is a New York-based freelance writer, specializing in travel, personal finance and lifestyle topics. Her work has appeared in Newsday, The New York Times, Long Island Press Magazine, Forbes.com, RD.com, Afar.com, Newsweek.com, CNTraveler.com, among others. When she’s not encouraging people to spend money wisely, she travels the globe to satisfy her wanderlust and to inspire others to do the same!