While multiple sclerosis (MS) is classically known as a neurological disease that affects young adults, it manifests before the age of 18 in around 5 percent of MS patients. This is known as pediatric MS. Though what’s known about it looks a lot like adult MS, the complexity of MS in children may go deeper given their already vulnerable and changing state.
Here’s a look at the realities of MS in children, including symptoms it can cause, how it’s diagnosed, available treatments, and how to help your child cope.
When an adult or child develops MS, it means that his or her immune system mistakenly attacks the central nervous system, which is comprised of the brain and spinal cord. More specifically, in MS, the immune system attacks the cells—called oligodendrocytes—that make the myelin sheath, the fatty covering of nerve fibers. The attack, which leads to damaged or destroyed myelin, known as demyelination, impairs nerve signaling.
Since nerves cannot communicate as effectively when their myelin sheath is damaged or lost, a variety of symptoms develop based on where in the brain and spinal cord the attack occurred.
The course of this disease is highly individualized and different for everyone, depending on where demyelination has occurred.
Like adult MS, pediatric MS is more common in girls than boys, and it’s believed to develop from a combination of having certain genes and being exposed to one or more environmental triggers.
It’s important to understand that MS is not directly inherited. Rather, one or more genes make you more susceptible to developing MS than someone who doesn’t have those genes. If you have a first-degree relative with MS, your lifetime risk of developing it is 5 percent. The below statistics show how the chances of developing MS can increase based on one’s family history of the condition.
Researchers are currently examining a number of genes that may be linked to MS, especially specific immunologic human leukocyte antigen (HLA) genes that have been associated with developing MS.
While it’s not known precisely what in the environment triggers MS development, infection with viruses, like the Epstein-Barr virus (EBV), and exposure to cigarette smoke have been carefully examined over the years.
Research suggests that the Epstein-Barr virus is associated more strongly with pediatric MS than adult MS.
Vitamin D deficiency may also be a trigger, especially since research has shown that MS is more prevalent in northern latitudes where sun exposure tends to be less frequent in the winter.
Childhood obesity as a trigger is also being examined.
Most symptoms of pediatric MS are similar to those that occur in adult-onset MS, but studies have shown a few differences between the two.
Like adults, symptoms of MS in children may include:
- Feeling unusually tired, both mentally and physically (called MS fatigue)
- Depression or behavioral problems
- Cognitive problems like difficulties with memory, information processing, and attention
- Vision trouble and/or eye pain
- Clumsiness and falls
- Bladder or bowel problems
- Weakness on one side of the face, arm, or leg
- Muscle spasms and stiffness
The noted differences between pediatric MS and adult MS have to do with the onset of MS and include:
- Optic neuritis: Research shows that children with MS are more likely than adults to present with isolated optic neuritis, which causes pain with eye movement and vision problems and is most commonly caused by MS.
- Isolated brainstem syndrome: This syndrome refers to demyelination of nerve fibers in the brainstem, which connects your spinal cord to your brain. This demyelination may lead to symptoms like vertigo or double vision, and it’s more common in kids than in adults.
- Encephalopathy: Children with MS are also more likely than adults to develop symptoms of encephalopathy such as headache, vomiting, seizures, and/or confusion or trouble staying awake, although, in general, these symptoms aren’t common.
The vast majority—97 percent to 99 percent—of children with MS have relapsing-remitting MS (RRMS). With RRMS, you experience relapses—also called flares, exacerbations, or attacks—of neurologic symptoms. These relapses may last several days or weeks, and they often resolve slowly with either a complete or partial reversal of the symptoms.
RRMS is also the most common type of MS in adults, affecting 85 percent to 90 percent; but according to the National MS Society, children may experience more frequent relapses than adults. However, research shows that kids recover from these relapses quite well and often more rapidly than adults do.
Diagnosing MS in the pediatric population can be tricky for many reasons. One is simply a lack of awareness. Due to its rarity—only an estimated 8,000 to 10,000 children in the United States have been diagnosed—pediatric MS may not be on many pediatricians’ radars, especially if a child complains of more nonspecific—but debilitating—MS symptoms like fatigue.
Diagnosis is also challenging because MS symptoms may mimic those of other central nervous system demyelinating conditions, like acute disseminated encephalomyelitis (ADEM), transverse myelitis, optic neuritis, or neuromyelitis optica (Devic’s disease).
The key to distinguishing other demyelinating conditions from MS is that in MS, there are multiple episodes of neurologic problems; they’re not a one-time isolated event.
More specifically, when diagnosing a child with MS, he or she must experience at least two separate and distinct MS attacks—just like an adult. These attacks must occur at least one month apart and be in different areas of the central nervous system.
Ultimately, diagnosing MS in a child requires some patience. It’s not uncommon for a child’s “story” to unfold over time, especially since symptoms can come and go, and a child may feel back to his or herself in between relapses.
5 Myths About Life With MS
Some of the diagnostic tools healthcare providers use to diagnose MS include:
- Medical history: Your child’s doctor will get a carefully detailed medical history, which can help him or her identify current or past symptoms that indicate MS.
- Neurological exam: Your healthcare provider will perform a thorough neurological examination, which includes testing your child’s muscle strength and balance, looking into his or her eyes, checking reflexes, and performing sensory tests.
- Magnetic resonance imaging (MRI): Your child’s doctor will also order an MRI of the brain and/or spinal cord to see if there are MS lesions, which are signs of MS nerve inflammation. A magnetic resonance imaging (MRI) scan is not only helpful for diagnosing MS, but it’s also used to monitor the disease. By comparing old MRIs to new ones, healthcare providers can see if your child is developing more MS lesions, even if he or she isn’t having symptoms.
- Lumbar puncture: Your child’s neurologist may also perform a lumbar puncture, commonly known as a spinal tap. During this procedure, a thin needle is inserted into your child’s lower back in order to remove a small amount of fluid that bathes the spinal cord. This fluid is called cerebrospinal fluid and it may contain clues, like the presence of oligoclonal bands, that help practitioners confirm an MS diagnosis.
- Evoked potentials: In some cases, evoked potentials may be recommended. These tests allow your child’s doctor to see how well nerves carry messages from stimuli. For example, visual evoked potentials measure how well nerve messages travel along the optic nerve pathway, as your child looks at a computer screen of alternating patterns. Impaired nerve signaling along the optic nerve pathways is fairly common in MS, even if a person reports no vision troubles.
Like adult MS, there is no cure for pediatric MS, but there are treatments that can slow the course of the disease and manage relapses.
Disease-modifying treatments (DMTs) can help prevent relapses, reduce the number of MS lesions in the brain and spinal cord, and slow the disease down, delaying the onset of disability. The majority of these haven’t been studied in children, though they’re known to be effective for adults and are often used off-label to manage pediatric MS.
In May 2018, the U.S. Food and Drug Administration (FDA) approved the use of Gilenya (fingolimod), an oral DMT, to treat children and adolescents 10 years of age and older with relapsing MS. Gilenya is the first therapy ever approved to treat pediatric MS and is considered an alternative first-line treatment.
Some of the other DMTs that healthcare providers may choose to treat pediatric MS include:
- Self-injected medications: Examples are Avonex, Betaseron, or Rebif (interferon beta) and Copaxone and Glatopa (glatiramer acetate). Along with Gilenya, these are considered first-line treatments.
- Oral medications: Tecfidera (dimethyl fumarate) is used to treat kids and teens with MS and is the only other DMT besides Gilenya that has shown at least some evidence that it’s safe and effective for the pediatric population.
- Infusions: Tysabri (natalizumab) may be used for adolescents, but there’s no dosing information for younger patients.
A 2018 phase 3 trial of 215 patients with relapsing MS ages 10 to 17 years randomly treated half the patients with Gilenya and the other half with Avonex (interferon beta-1a) for up to two years. The researchers found that the patients who took Gilenya had lower relapse rates and fewer lesions on their MRIs than those who took Avonex.
However, the study also revealed that there was a higher number of serious adverse events in the Gilenya group than in the Avonex group. In the Gilenya group, 18 patients experienced at least one serious event, compared to seven patients in the Avonex group.
These serious adverse events included:
- Leukopenia, a decrease of white blood cells
When children have a relapse, corticosteroids are typically prescribed just as they are for adults. These medications improve symptoms and reduce the duration of the attack. As with adult MS, corticosteroids have no long-term benefit.
A common regimen for treating an MS relapse is Solu-Medrol (methylprednisolone) given through the vein (intravenous) once daily for three to five days. This may be followed by a gradually tapered dose of oral corticosteroids, usually prednisone, over several days.
Managing the symptoms of MS is paramount to improving a child’s quality of life and daily functioning. It can be especially difficult to manage invisible symptoms, like fatigue, depression, and cognitive problems. A child or adolescent may have trouble communicating these symptoms or feel unheard when trying to explain them to adults.
Childhood and adolescence are also times of peer and academic pressures, and being diagnosed with MS often places extra weight on a child’s shoulders. Just imagine trying to study for three tests when you’re fatigued or attempting to focus on a school assignment when your memory is fuzzy and the classroom noise feels like a bee buzzing in your ear.
This is why a multifaceted approach is required to care for a child with MS. Not only does a partnership need to be formed with your child’s neurologist, but other professionals need to be involved in his or her care. Some of these professionals may include a psychologist, physical therapist, and occupational therapist.
What Can’t Be Seen
Because they aren’t physically apparent, “invisible” symptoms of MS—like fatigue, mood changes, and cognitive impairment—may not only be difficult for your child to accept and manage, but also difficult for others to acknowledge.
Here are some specific steps you as a parent can take to better understand and deal with these symptoms that, while less visible to others, may be the most disabling for your child.
Your child’s brain, while fascinatingly flexible and beautiful in its development, is also vulnerable to its environment. So, when a disease like multiple sclerosis strikes at a young age, key areas of cognition like thinking, memory, and language skills may be affected. It’s estimated that around one-third of children and teens with MS have some sort of cognitive impairment.
The most common cognitive problems seen in pediatric MS include difficulties with these cognitive tasks:
- Attention: Performing complex tasks like math equations or completing an exam may become more difficult, especially in busy, noisy situations like a classroom.
- Memory: This includes tasks like remembering where something was left, storing information, and being able to recall new information later.
- Naming and recognition: Difficulties with this can feel like the word your child wants to say for an object is on the tip of his or her tongue.
- Processing information: It may take longer for your child to process and learn new material, especially in the classroom.
While children may be more susceptible to changes in cognition than adults, the upside is that compared to adults, experts speculate that children may be able to better compensate for—and adapt to—their cognitive difficulties.
Common tools used for children with MS-related cognitive problems include:
- Memory aids: This can include tools such as a daily planner, reminder lists, a phone with memory aid apps, sticky notes, mnemonics, or alarms on a watch.
- Brain exercises: Crossword puzzles and word games can help hone cognitive skills.
- Organization: This includes learning organization skills and decluttering at home and at school.
- Relaxation: Humor and learning how to relax—for example, with deep breathing and meditation—can relieve stress during frustrating moments.
Since many cognitive changes can be subtle or influenced by other factors in your child’s life like stress, pain, or depression, it’s best for him or her to undergo a neuropsychological evaluation, especially if concerns are arising in school or at home.
In the end, knowing exactly what your child is struggling with is ideal for moving forward with a plan. You and your child, along with his or her teacher, psychologist, principal, and other professionals, can make accommodations or modifications that fit your child’s needs.
Aside from cognitive development, childhood and teenage years are a prime time for social and emotional development. This is a time when a child is coming into her own, exploring his identity, and embracing friendships. But extreme grief or anger over a diagnosis of MS coupled with depression that stems from MS-related changes in the brain can be overwhelming for a child.
It’s perfectly normal for children, like adults, to feel sad or anxious at times. But when that sadness or anxiety is persistent, long-lasting, and begins to affect overall daily functioning, a mental health condition that requires professional guidance, like depression or an anxiety disorder, may be present.
Depression is fairly common in pediatric MS, occurring in 20 percent to 50 percent of kids. Besides sadness or excessive worry, other signs to watch out for in your child include:
- Appetite changes: Is your child eating less and/or losing weight? Or is he or she eating more than normal to cope with negative feelings?
- Sleep difficulties: Is your child having a difficult time falling asleep or staying asleep?
- Behavior problems: Is your child more irritable or acting out at home or at school?
- Loss of interest: Is your child not excited by or engaged in the activities he or she once enjoyed?
While it’s difficult to watch your child hurting, it may help to know that there are therapies that can help, including:
- Cognitive-behavioral therapy (CBT) with a pediatric psychologist or therapist
- Antidepressant medications
- Support groups, such as connecting with others online through the National MS Society (this can be a source of support for you, too)
If you notice a change in your child’s mood or behavior, it’s important to seek advice from his or her healthcare provider. You may need a referral to a therapist, psychologist, or psychiatrist, who can help your child learn to cope more effectively and increase his or her quality of life.
Fatigue is one of the top complaints in MS, and unfortunately, this doesn’t exclude kids and teens. About 30 percent of children with MS experience debilitating fatigue, often described as “whole-body exhaustion plus brain fog” that’s severe and may occur in the morning even after a refreshing night’s sleep. This fatigue can interfere greatly in your child’s daily activities, especially at school.
The challenge with managing fatigue in pediatric MS is that it often stems from more than one cause.
For one, the disease itself often causes fatigue, and this is probably the hardest culprit to treat. While experts have not precisely determined why people with MS experience this exhaustion, just imagine how hard nerves must work to move, feel, and think while nerve pathways are damaged or blocked off.
Fortunately, other sources of fatigue in MS are easier to treat (if not curable), which is why it’s important to have your child’s fatigue carefully evaluated by both your child’s neurologist and pediatrician.
Some of these non-MS-related causes of fatigue include:
- Medications: If your child is on interferon therapy, a type of disease-modifying treatment, this can cause fatigue and flu-like symptoms. Medications that are used to treat bladder problems or muscle spasms may cause tiredness as well.
- Sleep problems: Poor sleep habits, insomnia related to depression and/or anxiety, or a sleep condition like restless legs syndrome may contribute to fatigue.
- Other medical conditions: Thyroid disease, iron deficiency anemia, viral infection, and depression are examples of non-MS health conditions that cause fatigue.
Once you, your child, and your healthcare team have sorted out and treated other causes of fatigue, it’s a good idea to see rehabilitation specialists.
Rehabilitation therapies that are effective for fatigue include:
- Physical therapy: A physical therapist can access your child’s balance, weakness, and stiffness and address mobility issues, if necessary. With those in mind, the therapist can devise an exercise program that can improve your child’s fatigue while being safe and keeping unique limits in mind. If exercise is not in your child’s interest or ability, yoga is a great and effective alternative.
- Occupational therapy: An occupational therapist can help your child compensate for and/or cope with everyday difficulties related to MS. More specifically, an occupational therapist can teach your child energy-conservation strategies. For instance, let’s say your teenager loves volleyball but finds she is too fatigued when she gets to practice to enjoy it or even participate sometimes. In this case, your therapist may recommend getting rides to school instead of walking and taking an afternoon nap on the days she has volleyball practice.
Educational accommodations may need to be considered, like extra bathroom breaks if your child has bladder problems, afternoon rest time if he or she has disabling fatigue, or extra time to get around the school campus if there are existing mobility limitations.
Talk to your child’s teachers and school administration about what she needs to make school a positive experience. Remember, too, that your child may not experience all potential MS symptoms. Knowing this may help the list feel less overwhelming. Treatment plans are unique in that they address the specific symptoms your child does experience.
A Word From Get Meds Info
Whether you have MS yourself or you’re the parent of a child with MS (or both), keep up the good work of educating yourself, seeking answers, and teaching your child to live life to the fullest. Hopefully, your mind can be eased a bit knowing that research on pediatric MS is taking off and evolving—a great start to hopefully finding a cure someday.