Multiple sclerosis (MS) is an inflammatory autoimmune disorder that affects the central nervous system. In people with MS, the body’s immune system targets the protective coating around nerve cells. About 1 in 1,000 people in the United States are currently living with MS.
Although MS is typically diagnosed in people ages 20 to 50, it can also develop in children and teenagers. Research suggests that up to 10 percent of people with MS develop the condition in childhood.
If you’re the parent or caregiver of a child who may have MS, becoming well-informed can provide you with tools to help them manage the condition. Here are six things you should know about childhood MS.
The causes of MS are still unknown — whether the condition occurs in children or adults. One theory is that MS is related to a genetic predisposition that’s triggered by an infectious agent, such as a virus or bacterium. But the specifics of these triggers haven’t been identified.
It’s important to know that, regardless of what the triggers may be, there was nothing that you or your child did to cause the onset of MS.
Even though the cause of MS remains unknown, researchers have identified several factors that may increase the risk of MS. As with many autoimmune disorders, the rate of development is significantly higher in females. At least three times as many girls are affected by MS than boys. Childhood MS is also more common the further north or south of the equator you live. The reason for this is unknown.
Genetics also play a role. Children of a parent with MS have a three to five percent risk of developing the disorder over their lifetimes. However, there’s nothing that can be done to prevent MS.
The symptoms of childhood MS are often similar to those seen in adults. However, MS affects the body differently from person to person, so there’s not a standard group of symptoms that occur in everyone. The most common symptoms of MS include:
- feeling tired
- trouble walking
- vision problems
- bowel or bladder problems
Every person with MS has their own course of symptoms. So, it’s impossible to predict which symptoms an individual child might develop.
One common experience with MS symptoms is to have stable, relatively symptom-free periods, followed by “attacks.” New symptoms may occur during an attack, or old symptoms may worsen over several days or weeks. It’s also possible to have symptoms that gradually intensify over periods of months or years.
MS symptoms vary from person to person, which can often make it difficult to diagnose. It’s even more challenging to diagnose MS in children because many other childhood disorders have similar symptoms.
No single test can confirm a child has MS. A variety of examinations are typically used to find out if someone has the condition. These include neurological testing, spinal fluid testing, and MRI scans. Unfortunately, even after rigorous testing, doctors may not be able to diagnose certain people for years after they first experience symptoms.
An international panel of MS experts recently devised a new framework of diagnostic criteria called the McDonald criteria. These new criteria may make it easier for health professionals to provide an accurate diagnosis in the near future.
MS may be described in terms of the “disease course,” or type of MS. The vast majority of people, including children, are first diagnosed with relapsing-remitting MS, according to the National MS Society.
The main treatment for MS is a class of drugs known as disease-modifying therapies (DMTs). These medications slow the progression of MS.
In 2018 the U.S. Food and Drug Administration (FDA) approved the oral medication fingolimod (Gilenya) for treating relapsing MS in children and adolescents 10 years of age and older. It’s the first DMT to receive FDA approval for treating pediatric MS. The treatment was already approved for use in adults. Gilenya has been shown to significantly reduce the rate of MS relapses.
There are no FDA-approved DMTs for children younger than 10 years old, but MS is very uncommon in this age group. However, MS medications that are only approved for adults are often still used to treat children and teenagers. This is referred to as an “off-label” use of a drug.
Potential treatments for pediatric MS that are currently in clinical trials include the oral medications dimethyl fumarate (Tecfidera) and teriflunomide (Aubagio). Both of these treatments are already FDA-approved to treat adult MS.
Another treatment sometimes used off-label for MS is called rituximab (Rituxan). It hasn’t received FDA approval to treat MS in either adults or children. However, the National MS Society notes that the drug has been studied in small trials for children with MS. Several studies, including a 2016 study in the journal Neurology, suggest it may be a safe and effective option for adults.
When it comes to treatment, the best course of action is to work closely with your child’s healthcare team. Your child’s doctor can recommend an individualized treatment plan that will help minimize potential side effects and meet your child’s unique needs.
The decision about whether to delay telling your child about a positive MS diagnosis can be a difficult one. Most parents or caregivers don’t want to cause their child anxiety. However, trying to conceal your child’s diagnosis can sometimes increase their stress. Your child may know that something is wrong, and they may jump to conclusions that are more frightening than the truth.
If you’re able to talk calmly and openly with your child about their diagnosis, your strength may make them feel less worried. Since your child is going to have an ongoing relationship with their healthcare team, discussing MS and allowing them to ask questions will help them communicate more openly with their doctors.
Caring for a child with MS can be a difficult journey. But it’s important to remember that you’re not alone. Aside from your child’s healthcare team, there are a number of online groups and pediatric MS centers you can turn to for support. There’s no cure for MS yet, but research into treatment is constantly evolving. A little hope can go a long way.