Overview

Paediatric multiple sclerosis is a rare disease that has a great impact on children’s quality of life. Here are some quick fact-checks before we dive into the details. Is paediatric multiple sclerosis fatal? Did I do something to cause this? Is it contagious? The answer to these questions is NO.

But is there a cure? Unfortunately, not just yet. In this article, we will give you an easy-to-understand but comprehensive guidance to empower you with more paediatric multiple sclerosis knowledge. 

What is multiple sclerosis?

Most people are diagnosed with multiple sclerosis (MS) in their adulthood, but do you know that around 2-10% of people with MS experienced their first symptoms before the age of 16?¹

MS is a chronic immune disease that impacts the central nervous system. It happens when your immune system doesn’t work properly to protect you against infections instead of attacking your nerves by mistake. The nervous system, including the brain, spinal cord, and a complex network of nerves, controls all your body’s functions. That’s why you can get symptoms in different parts of your body. 

Cause of multiple sclerosis

The exact cause of MS is unknown, but research has suggested that both environmental and genetic factors are the contributors to the disease. Here are some examples of environmental factors: Vitamin D deficiency, Epstein-Barr Virus (EBV) exposure, cigarette smoking exposure, obesity, etc.² MS is not considered an inherited condition as it's not passed down from generation to generation. However, some genes make it more likely to trigger the condition when combined with risk factors.

Importance of early diagnosis and treatment

Although children with MS have relatively slower physical disability progression, they have more frequent nerve attacks that result in poorer brain development and cognitive performance when compared with adult patients.³ Research has shown that the rate of having a second attack after the first one is 80% in children and around 45% in adults.⁴ These damages can have long-term consequences, including a lower likelihood of pursuing higher education, lower annual earnings, and frequent sick days during work life.³

Living with discomfort without knowing the reason is frightening. Since we now know that nerve damage can occur in the earliest stages of MS, it is important to confirm the diagnosis so that you can start the appropriate treatment as early as possible.

Diagnosis

MS is a complex condition. There’s no single symptom or examination that can, on its own, diagnose MS.⁵ It is often difficult to differentiate the diagnosis as symptoms might vary with individuals and present similarly to other medical conditions, so it may have taken you a long time to get to a confirmed diagnosis. This can mean having many medical evaluations to rule out other possibilities and then more tests to see if you have MS. 

Currently, MS is diagnosed by applying several types of evaluations and assessments including medical history, neurologic exam and lab tests.⁵

Medical history

You may have encountered unusual symptoms over a long while. Your symptoms may have gone away after a while and seemed unimportant at the time. Perhaps you thought it might be due to daily activities; for example, constant tiredness/fatigue could be due to exercise. 

If you are looking for medical consultation, do tell your doctor about any unusual symptoms that might come out of nowhere or last for too long. As everyone experiences different symptoms depending on which parts of the brain or spinal cord have been affected, it is important to be aware of what the possible common symptoms are. Additionally, when the occurrence of new symptoms or the worsening of old symptoms happens, it’s often a sign of exacerbation, which is often referred to as a relapse.

MS has many possible symptoms, but not every child will experience all of them:

• Blurred vision (optic neuritis): an impact on vision due to the inflammation of the optic nerve, often a first sign of MS
• Numbness and tingling sensation usually in the arms or legs that don’t go away
• Difficulties with learning, memory, concentration, balance or coordination
• Fatigue: a sudden loss of energy and not being able to continue an activity
• Weak leg muscles, tremors or spasms
• Dizziness

It might not be as easy to spot the symptoms in children compared to adults. They might express discomfort through emotions; additionally, like everyone else, children would develop stress when living with discomfort. Although everyone expresses their emotion differently, here are some common emotional symptoms to spot that you can discuss with their medical team:

• Sudden changes in appetite
• Changes in sleeping patterns
• Low energy
• Irritability
• Feelings of sadness
• Loss of interest in activities

Neurologic exams and lab tests

Your diagnosis of multiple sclerosis is likely based on the McDonald criteria.⁶ This is a tool for clinicians to ensure that they provide sufficient check-ups to accurately confirm the diagnosis of MS as early as possible. This set of criteria has been reviewed and revised several times to achieve better accuracy, a timely defined diagnosis, and reduce the chance of misdiagnosis. 

As we already know, MS is a condition which involves a series of examinations. The latest version of the McDonald's criteria can successfully predict up to 71% of MS diagnoses, with an additional 18% increase in diagnostic sensitivity when compared with the previous revision.³

These are the tests that you might expect during the process of diagnosing:

• Magnetic resonance imaging (MRI)⁶ 

Magnetic resonance imaging (MRI) is a diagnostic tool that offers a sensitive and non-invasive way to examine the brain, spinal cord or other parts of the body and provide a visualized image of these parts.

• MRI can detect the damaged areas present as white patches (often called lesions) in your brain caused by MS
• An MRI is a valuable tool to track the progression of the disease. In cases where a patient has experienced only one relapse of symptoms, additional evidence is required to confirm the diagnosis of MS definitively. As the progress of the disease can be detected through MRI scans, this is why MRI play a vital role in presenting the different lesions at different points in time
• Cerebrospinal fluid (CSF) analysis⁶

This analysis is an additional diagnostic tool. Cerebrospinal fluid is a liquid that surrounds the brain and spinal cord. To obtain cerebrospinal fluid for analysis, a procedure called a lumbar puncture, commonly referred to as a spinal tap, is performed. During this procedure, a small sample of the cerebrospinal fluid is collected from your lower back. 

In MS, damage to the protective layer of your nerves causes certain types of proteins to be released into the spinal fluid. When these proteins (called oligoclonal bands) are identified in the spinal fluid, but not in the blood, this finding might suggest inflammation in your central nervous system and a high chance of MS.

Other tests you might expect to rule out other conditions that cause similar symptoms to MS:

Evoked potential test:⁶ a painless and non-invasive tool that is commonly used at the earlier stages of MS. It measures the speed of messages travelling along your nerves to your brain. If the transmission is slowed, this may suggest damage to the nerves of MS.

Treatment

Learning to manage your symptoms may take time and you may need to try several options to find out what works best for you. A comprehensive MS care involves the expertise of many different healthcare professionals as multiple parts of the body might be affected. However, comprehensive MS care is just part of your overall health management strategies. Regular check-ups are just as important for you as they are for everyone else, for example, mental health sessions and routine dental appointments.

Managing MS often involves two different approaches:

• Symptomatic treatments: to manage symptoms of MS
• Disease-modifying drugs (known as DMDs or DMTs): to manage the underlying disease

Symptomatic treatments

There are some treatments to help you manage physical and mental symptoms and soothe the discomfort to improve your quality of life:

Medicine treatments: such as steroids when nerve attacks happen.

Function promotion through rehabilitation: 

• Physiotherapy: improve or maintain their ability to perform effectively and safely at home and school, and to help with muscle stiffness
• Cognitive behavioural therapy: help them with pain, anxiety or depression management
• Occupational therapist: may give them aids or equipment for daily work
• Speech and language therapy
• Complementary and alternative medicines (CAM): non-medicine treatments that are thought to help improve physical and mental well-being. For example, vitamin D, acupuncture, pilates and mindfulness 

Disease-modifying drugs (DMDs)

Different DMDs work at different parts of the immune system to reduce the inflammation caused by MS. These inflammations do not always result in a relapse or visible symptoms. This silent activity may mean that although you are feeling well, there may still be damage happening from nerve attacks. Research suggests that DMDs should be initiated as soon as possible after diagnosis, as it has been proven to decrease the risk of disability and the build-up of damage to nerve cells. ⁷

The main benefits of taking DMDs are:

• Manage both visibly active (relapses) and silently active damage
• Fewer relapses
• Less severe relapses
• Reduce the build-up of disability which can occur if you don't recover completely from relapses

Most of the DMDs are licensed for use in adults in the UK, and some are now available for young people too. They are in a wide range of forms, such as pills, injections, or infusions, and also work slightly differently from each other with different requirements. It might take a while to see which works best for you. Here are some common DMDs for children aged 12 and above:

• Beta interferon 1a
• Beta interferon 1a
• Beta interferon 1b
• Glatiramer acetate⁸

For the younger group, research has also approved an oral form of medication for children aged 10 and above:

• Fingolimod⁴
• Teriflunomide^8,9

Patients with MS will have access to a multi-disciplinary team (MDT) consisting of professionals experienced in the treatment of every clinical aspect and care of children with MS. Please be advised that if you’re having concerns either towards the development of MS or uncertainties about your MS treatment, contact your doctor or your MDT to have a full consultation to achieve optimal condition management.

Summary

Paediatric multiple sclerosis is a chronic immune disease impacting the central nervous system and resulting in possible poor life quality. Although its exact cause is unknown, both environmental and genetic factors are considered risk factors. Spotting symptoms might be challenging as children might not express themselves well. Familiarizing yourself with the common signs and symptoms helps you and your children know when to seek medical attention and how to manage their symptoms better. Early diagnosis and interventions are crucial at this stage as multiple sclerosis can damage the developing brain and have a long-term impact on cognitive and physical functions.