9 Must-Ask Questions for Your Kid’s MS Doctor
Your child has just been diagnosed with multiple sclerosis, an autoimmune disease that leads to progressive nerve damage, and you probably have a million questions, including: “Is my child going to die?” (No); “Is there a cure?” (Not yet); and “Did I do something to cause this?” (Nope). Ok, deeep breath. Now that you've got answers to the scary questions, let's move on to the rest. Here’s what you should ask your doctor to help you figure out how you can best support your child with MS.
Wait, Isn’t MS an Adult Disease?
Good question! Most people with MS get their diagnosis between the ages of 20 and 40, says the National Multiple Sclerosis Society. But, the Pediatric Multiple Sclerosis Alliance estimates that 8,000 to 10,000 children and teens are living with MS in the U.S. Increased awareness of childhood MS–often called pediatric MS or pediatric-onset MS (POMS)–plus improved diagnosis through MRI scanning, means the number of people being diagnosed under the age of 18 is increasing.
How Is MS Different in Kids vs. Adults?
While there are different types of MS in adults, children and adolescents predominantly have a relapsing-remitting course (RRMS), says Namrata Shah, M.D., from the division of pediatric neurosciences at Le Bonheur Children’s Hospital in Memphis, TN. This means there are clear attacks (relapses) of symptoms that subside (remit). During the periods of remission between attacks, there is no progression of the disease, which is typical for adults with RRMS, too. According to the National Multiple Sclerosis Society, children may experience more frequent relapses than adults. While doctors don’t completely understand why kids with MS flare more than adults with MS, some experts believe the inflammatory response is more active in the under-18 set.
How Is MS Treated in Kids?
It’s true, there is no cure for MS—yet—but there are many sophisticated treatments that can make your child’s life with MS way better. Since kids tend to have more relapses, Dr. Shah says they’re more likely than adults to utilize an arsenal of different meds, like high dose steroids, immunomodulatory agents (IVIG) or plasma exchange, which boost immunity, minimize inflammation, and reduce the frequency of relapses.
I Keep Hearing About ‘DMTs’—Are They Even Relevant to Kids?
In 2018, the first disease-modifying treatment (DMT) commonly used to treat adult MS was approved by the Food and Drug Administration to help reduce disease activity and decrease the number of new lesions in pediatric MS. The oral therapy Gilenya (fingolimod) is now approved to treat children and adolescents age 10 or older. Common side effects of the medication include headaches, dizziness, and diarrhea. “Studies are in progress evaluating other DMTs in pediatric MS,” Dr. Shah says.
How Do We Manage the Relapses?
Often, doctors will only prescribe medication if a relapse is significant enough to affect the child’s ability to function at home and at school, like if they’re having trouble seeing (optic neuritis) or if they aren’t moving around like they normally do. While doctors prescribe medication based on the individual patient’s needs, an MS relapse is typically managed with a three or five-day course of intravenous or oral corticosteroids, sometimes followed by a tapering dose of oral corticosteroids over several days.
Should We Contact Our School?
For any child with a complex disease like MS, optimal management of symptoms is best achieved with team effort: at home, at the doctor’s office, and also at school. “Let the school nurse, therapist or counselor know your child has MS, as your child might benefit from receiving additional time and accommodations on exams or tests, because it can be difficult for a child with MS to concentrate or process information, and the condition can cause fatigue,” says says Barbara Giesser, M.D., professor emeritus of clinical neurology in the David Geffen School of Medicine at UCLA. “Teachers in the know will also be able to monitor your child’s day-to-day mood, self-esteem, appetite, and interests.”
Can My Child Exercise?
You shouldn’t have any concerns about your child exercising—in fact, research, published in the journal Neurology, found that moderate exercise can help ease the symptoms of MS. “You don’t want them to overdo it, but for children with MS, aerobic exercise can help promote their ability to perform daily activities and improve their mood,” says Dr. Giesser. There are no sports that should be excluded, unless the child has a specific impairment that might make them more susceptible to injury. For instance, if a child has difficulty with balance, gymnastics might be a little problematic. “In general, attention should be paid to each child’s particular abilities and limitations during any physical activity,” she adds.
What Else Can I Do to Help My Child?
While your child may need medications to treat their MS, that’s not the be-all-end-all. “[Meds] need to be coupled with a healthy lifestyle, a comprehensive MS care plan, and a focus on overall well-being in all aspects of your child's life,” says says Dr. Giesser. To really help your kid feel their best, don’t overlook the importance of emotional support. Link up with organizations like Oscar the MS Monkey where your child can meet and bond with other kids like them.
What If I Start to Feel Overwhelmed?
As well as helping your child live their best life with MS, it’s important to look after yourself, too. Pediatric MS support groups can provide advice, comfort and empathy at every stage of your family’s MS experience. Many of the groups specific to pediatric MS—like the Pediatric Multiple Sclerosis Alliance—offer whole-family support, reinforcing the fact that you are not meant to go at this alone. Just as your child finds their crew, you need to find your own tribe of moms, dads, and caregivers who can relate.
Incidence of Pediatric MS: Neurology. (2019). “Clinical trials of disease-modifying agents in pediatric MS.” n.neurology.org/content/neurology/early/2019/05/01/WNL.0000000000007572.full.pdf
Relapsing-remitting MS: National Multiple Sclerosis Society. “Pediatric MS.” nationalmssociety.org/What-is-MS/Who-Gets-MS/Pediatric-MS
Managing Relapses: National Multiple Sclerosis Society. (2019). “Kids Get MS Too: A Guide For Parents of a Child or Teen With MS.” nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/KidsGetMSToo_ParentsGuide.pdf
Exercise and Pediatric MS: Neurology. (2015). “Lower physical activity is associated with higher disease burden in pediatric multiple sclerosis.” n.neurology.org/content/85/19/1663
Advice and Support: MS Connection. “Join the Community.” msconnection.org/Authentication?authstep=joincommunity