What is pediatric multiple sclerosis (MS)?
Multiple sclerosis (MS) is a central nervous system disorder. This means it affects the brain and spinal cord. It is an autoimmune disease as it is inflammatory—meaning that white blood cells, which protect against infection, enter the nervous system and cause damage. The harm is done because the myelin sheath, the protective coating for nerves, is stripped off by the antibodies produced by the immune system. (This is called demyelination.) MS is a long-term disease that can happen to anyone.
Pediatric MS is multiple sclerosis that begins in children or teens. About 98% have relapsing-remitting MS, versus 84% of adults with MS. This means that symptoms come and go (relapse and remit). When symptoms are gone, the disease is still able to progress. This condition may also be called pediatric-onset multiple sclerosis (POMS), early-onset MS, or juvenile MS. Relapses seem to happen more often in children and teens. This group appears to recover from the neurologic disability more quickly but are at increased risk of cognitive difficulties that can affect school work.
Who is affected by pediatric multiple sclerosis (MS)?
There are about 730,000 people in the U.S. with multiple sclerosis. Onset during childhood accounts for about 5% of the total.
Before puberty, the ratio of females to males who develop pediatric MS is about equal. After puberty, the ratio is about 2-3 to 1. This might indicate that sex hormones have a role in developing the condition.
Symptoms and Causes
What causes pediatric multiple sclerosis (MS)?
In short, we do not know what causes multiple sclerosis. However, research does point to an increase in risk due to the following:
- Being exposed to toxins, like secondhand smoke and pesticides.
- Having low levels of vitamin D in your blood.
- Being overweight.
- Genetic issues, especially in terms of the immune system.
- Being infected with the Epstein-Barr virus (having mononucleosis).
Is pediatric multiple sclerosis (MS) contagious?
No. Your child cannot give MS to someone else and cannot catch it from someone who has it.
What are the signs and symptoms of pediatric multiple sclerosis (MS)?
The symptoms of MS vary from person to person and may even be different from one day to the next. This is true for children and adults. The symptoms may be physically sensory (involving changes in feeling) or motor (changes in movement) or may involve other factors, such as vision, emotions, thinking, or walking. Most people have only a few of these common symptoms, not all of them.
Common symptoms include:
- Numbness, tingling, the “pins and needles” feeling, or pain.
- Dizziness, difficulty walking or keeping your balance.
- Fatigue, weakness, tremor (shaking).
- Problems with concentration or memory, depression.
- Problems with vision, including blurry vision, trouble seeing, or double vision.
- Sensitivity to heat.
Diagnosis and Tests
How is pediatric multiple sclerosis (MS) diagnosed?
Pediatric MS is diagnosed using widely agreed-upon guidelines. Tests include an MRI, a neurological examination and possibly other tests at times will be used for diagnosis. at times other tests will allow diagnosis. There are other diseases that may be similar to MS and other types of conditions that cause demyelination. These include acute infections, neuromyelitis optica spectrum disorder (NMOSD), autoimmune encephalitis and vasculitis of the central nervous system.
Some early signs of pediatric MS could include optic neuritis (ON), meaning painful vision loss in one or both eyes, and/or transverse myelitis (TM), which refers to weakness and or numbness due to an inflammatory spinal cord lesion. There are various diagnostic criteria that must be present for all of these conditions. MS can be diagnosed when the diagnostic criteria are met.
A neurologist will conduct a neurological examination, take a medical history, and will ask about symptoms you may have experienced. Many neurologic diagnoses have symptoms that are common across more than one disease. Diagnosing MS involves testing which may include:
Management and Treatment
How is pediatric multiple sclerosis (MS) treated?
For many years, the FDA had not approved any specific therapy for MS in children. It was the practice to use disease-modifying therapies (DMTs) that had been approved for adults. However, in 2018, the FDA approved an oral form of fingolimod (Gilenya®) to treat relapsing multiple sclerosis in children aged 10 years old and older. Fingolimod had been approved earlier for treating adults with MS. Other DMTs are currently in trials for pediatric use.
The goals of DMT usage are to decrease the number of relapses (also called attacks or flare-ups) and to control the number of lesions (abnormal spots) that appear on MRI scans. Overall, the goal is to slow down the disease activity and prevent long term disability.
Your healthcare provider will treat some related symptoms specifically. These include pain, fatigue, anxiety and/or depression. Your provider might recommend visiting a psychologist or a psychiatrist who works with children and teens.
It is true for children and teens with MS, and for people who do not have MS, that getting enough good sleep, eating healthy and regular exercise is important.
Clinical trials involving treatment for MS, including pediatric MS, may be available. Ask your healthcare provider if you are interested in participating. Also, there is an organization called US Networks of Pediatric MS Centers that organized treatment and research for the Pediatric MS patient and NARCOMS Registry for Multiple Sclerosis (https://www.narcoms.org/) that collects information from people with MS and shares it with researchers.
What are the side effects of fingolimod for pediatric multiple sclerosis (MS)?
Some of the side effects seen most often include:
- Higher levels of liver enzymes.
- Diarrhea, stomach pain.
- Cough, flu, sinusitis.
- Back pain.
- Pain in the hands and feet.
These are not the only side effects. There are some that are much more unlikely but also more serious. Your healthcare provider will discuss these with you.
Corticosteroid side effects are somewhat well-known. They include mood changes, insomnia, high blood pressure (hypertension) and high blood sugar (hyperglycemia).
What kind of a diet is recommended for someone with pediatric multiple sclerosis (MS)?
There is no special diet, but research has indicated that eating an unhealthy diet is linked to a higher rate of relapse in children with MS. It is recommended that people with MS make sure to consume adequate amounts of fruits and vegetables. Research suggests that a healthy lifestyle, healthy eating combined with exercising, may help lessen disease progression. And a healthy lifestyle is always a good thing for many reasons.
Outlook / Prognosis
What is the prognosis (outlook) for someone with pediatric multiple sclerosis (MS)?
First of all, due to the newer treatments of MS and the national centers to focus on the care of pediatric onset MS patients, the outlook can be positive. The patient and their caregivers need to meet regularly to manage the MS.
It is true that pediatric MS seems to affect cognitive function (thinking and learning) in the years following the start of the disease. It is a good idea for children or teens with MS to have neuropsychological testing so there is a baseline to keep in mind. This helps the healthcare team work with schools to improve education approaches.
Some people who have relapsing-remitting MS go on to develop secondary progressive MS. This form has few instances of relapses but slowly gets worse. People who have had pediatric MS tend to physically progress more slowly than people who develop MS as adults.
When should you call the doctor about pediatric multiple sclerosis (MS)?
If your child tells you about any neurological symptoms, it is very important to tell your healthcare provider. Finding MS early is key. Healthcare providers can evaluate the child or teen and determine the best path to a diagnosis, it is best to start with a Pediatrician then a referral to a Neurologist as needed.
Also, you and/or your child should make sure to contact the healthcare team if any new symptoms come up, or if flare-ups happen. Contact your provider if your child or teen develops changes in mood. This could mean that they are more irritable, sad, tearful or have changes in sleep habits.
Are there resources for children with pediatric multiple sclerosis and their families?
You might find the following organizations to be helpful to you.
- Family Caregiver Alliance-Multiple Sclerosis.
- International Pediatric Multiple Sclerosis Study Group.
- Multiple Sclerosis Association of America.
- Multiple Sclerosis International Federation.
- National Multiple Sclerosis Society.
- Network of Pediatric Multiple Sclerosis Centers