Understanding Pediatric MS

Multiple Sclerosis May Begin in Childhood

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While multiple sclerosis (MS) is classically known as a neurological disease of young adults, it can manifest, albeit rarely, before the age of eighteen. This is called pediatric MS.

Even though pediatric MS looks a lot like adult MS, the complexity of MS in children likely goes a lot deeper given their already vulnerable state. Let's take a closer look at the realities of MS in children, including how its diagnosed, what it feels like, and how both the disease and its symptoms can be treated.

Biology

When an adult or child develops MS, it means that his or her immune system mistakingly attacks the central nervous system, which is comprised of the brain and spinal cord. More specifically, in MS, a person's immune system attacks the cells (called oligodendrocytes) that make the fatty covering of nerve fibers (this is called the myelin sheath). The attack, which leads to damaged or destroyed myelin (called 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.

Causes

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.

Genes

It's important to understand that MS is not directly inherited. Rather, one or more genes makes a person more susceptible to developing MS than a person without those genes. Researchers are currently examining a number of genes that may be linked to MS.

Environmental Triggers

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.

Vitamin D deficiency may also be a trigger, although the scientific evidence supporting its role in pediatric MS is not as robust as it is in adult MS. Childhood obesity as a trigger is also being examined.

Symptoms

The vast majority (around 97 percent) of children with MS have the relapsing-remitting type (RRMS). With RRMS, a person experiences relapses (also called flares, exacerbations, or attacks) of neurologic symptoms. These relapses may last several days or weeks and often resolve slowly with either a complete or partial reversal of the symptoms.

RRMS is also the most common type of MS in adults (around 85 percent) but interestingly, according to the National MS Society, children often experience more frequent relapses than adults with early onset MS.

Symptoms of MS in children (similar to those in adults) may include:

  • Feeling unusually tired, mentally and physically (called MS fatigue)
  • Depression or behavioral problems
  • Cognitive problems (for example, difficulties with memory, information processing, and attention)
  • Vision trouble and/or eye pain
  • Dizziness
  • Clumsiness and falls
  • Bladder or bowel problems
  • Weakness on one side of the face, arm, or leg
  • Muscle spasms and stiffness
  • Pain

Interestingly, research reveals that children are more likely than adults to develop isolated optic neuritis, which causes pain with eye movement and vision problems.

Isolated brainstem syndrome is also more common in pediatric MS. This syndrome refers to demyelination of nerve fibers in the brainstem (what connects your spinal cord to your brain), which may lead to symptoms like vertigo or double vision.

Children with MS are also more likely than adults to develop symptoms of encephalopathy (for example, headache, vomiting, seizure, and/or confusion or trouble staying awake). Although, in general, these symptoms are not common.

Diagnosis

Diagnosing MS in the pediatric population can be tricky for many reasons. One reason is simply a lack of awareness. Due to its rarity (only 10,000 children in the United States have been diagnosed), pediatric MS may not be on a pediatrician's radar, especially if a child complains of more nonspecific, but debilitating, MS symptoms like fatigue.

Diagnosis is also challenging because symptoms may mimic those of other central nervous system demyelinating conditions, like acute disseminated encephalomyelitis (ADEM) or neuromyelitis optica (NMO).

The key to distinguishing these demyelinating conditions from MS is that in MS, there are "multiple" episodes of neurologic problems (not a one-time isolated event).

More specifically, when diagnosing a child with MS, a child (like an adult) must experience at least two separate and distinct MS attacks. These attacks must occur at least one month apart and be in different areas of the central nervous system.

In the end, 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 herself in between relapses.

Diagnostic Tools

In order to diagnose MS in your child, your doctor 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.

Your 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. An MRI is not only helpful for diagnosing MS, but it's also used to monitor the disease. By comparing old MRIs to new ones, doctors can see if a child is developing more MS lesions (even if the child is not having symptoms).

Your child's neurologist may also perform a lumbar puncture, 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 doctors confirm an MS diagnosis.

Lastly, evoked potentials (EPs) may be recommended in some cases. Evoked potentials allow a 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 a person 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.

Treatment

Like adult MS, pediatric MS is not curable, but disease-modifying treatments 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.

Disease-Modifying Treatments

In May 2018, the United States Food and Drug Administration (FDA) approved the use of Gilenya (fingolimod) to treat children and adolescents 10 years of age and older with relapsing MS. This is very exciting, as Gilyena will be the first therapy ever approved to treat pediatric MS.

This FDA approval is based on a large clinical trial that randomly and blindly gave children 10 years of age and older, with MS, either Gilenya or Avonex (interferon beta-1a). Results revealed a decrease in the number of relapses for the children taking Gilenya, as compared to those taking Avonex. The most common side effects in the study included:

  • Headache
  • Liver enzyme elevation
  • Diarrhea
  • Cough
  • Flu
  • Sinusitis
  • Pain in the back, abdomen, and/or extremities

These side effects could be managed under a doctor's care.

Until this FDA approval, disease-modifying treatments like the self-injected medications interferon beta (Avonex, Betaseron, or Rebif) and Copaxone (glatiramer acetate) were used "off-label" in children and teens with MS.

Relapses

Corticosteroids are prescribed for children during an acute MS relapse, as they 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 followed by a gradually tapered dose of oral corticosteroids (prednisone) over several days.

Symptom Management

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 the "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.

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 the child's neurologist, but other professionals needs to be involved in their care. Some of these professionals may include a psychologist, physical therapist, and occupational therapist.

Educational accommodations also have to be considered, like extra bathroom breaks if a child has bladder problems, afternoon rest time if a child has disabling fatigue, or extra time to get around the school campus if a child has mobility limitations. Understand that your child may not experience all potential symtoms—knowing this may help the list feel less overwhelming. Treatment plans are unique in that they address those specific symptoms your child does experience.

A Word From Verywell

Whether you have MS yourself or are a parent of a child with MS, remain resilient in gaining knowledge, seeking answers, and living life to the fullest, despite this setback.

Hopefully, your mind can be eased a bit knowing that research on pediatric MS is taking off and evolving—a great start to finding a cure one day.

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