Neuromyelitis Optica Spectrum Disorder (NMOSD) in Children

Neuromyelitis optica spectrum disorder (NMOSD or NMO) is a rare disorder affecting the nervous system. About 4 percent of all NMOSD cases happen in children. Because childhood NMOSD is so rare, little is known about the condition and how it may differ from NMOSD in adults.1

What is NMOSD?

NMOSD is an autoimmune disease. In NMOSD, proteins called antibodies made by the body’s own immune system attack nerves in the brain and spinal cord. Specifically, these antibodies attack the optic nerve. The optic nerve travels between the eyes and the brain to make sense of what we see in the world. In many ways, NMOSD is similar to multiple sclerosis (MS).2

Clinical features of NMOSD

Like in MS, the NMOSD antibodies attack the part of nerve cells that sends messages between cells. Also, NMOSD tends to be “relapsing.” This means people with NMOSD may have times where symptoms get worse between times without symptoms.2

During their first NMOSD attack, many people with NMOSD have symptoms such as:2,3

  • Throwing up
  • Fever
  • Seizures

Most people also have vision changes and eye pain, often in both eyes. Many develop weakness in the lower body (paraplegia) within 5 years of the first attack.2,3

NMOSD can cause many other symptoms of the nervous system, for example:2,3

  • Weakness in the facial muscles
  • Difficulty speaking
  • Poor balance

NMOSD in kids

Diagnosing NMOSD early is important. Visual problems in children with NMOSD may interfere more with their ability to function than similar problems in adults with NMOSD. Earlier treatment can lead to better results. But because it shares similar symptoms with other childhood conditions, NMOSD may be confused with other childhood disorders such as MS.1-3

Measuring antibody levels in the blood is the best way to diagnose NMOSD in kids. Antibodies can be seen in more than half of kids living with NMOSD within a year of their first NMOSD attack. But others may not show antibodies until a few years later.1

About half of all children living with NMOSD are diagnosed before 11 years of age. Experts also found that, after 11 years of age, girls are more likely to develop NMOSD than boys. NMOSD is also more common in nonwhite populations.3,4

NMOSD treatment

Treating NMOSD includes both managing sudden (acute) attacks and preventing future attacks. If doctors suspect that a child’s symptoms are because of NMOSD, the condition should be treated quickly. If acute attacks are not treated, they can have lasting effects.4

Because NMOSD is so rare in kids, not a lot of research on specific treatments exists. Instead, doctors treat NMOSD with the drugs known to work for adults using doses suitable for kids. Because NMOSD is an autoimmune disease, treatment focuses on suppressing the immune system. Common drugs used to treat NMOSD include:4

  • Steroids
  • Azathioprine
  • Mycophenolate mofetil
  • Rituximab

Psychological considerations for children

NMOSD is a chronic, relapsing, progressive disorder. It can be very hard for children to understand and to cope with.5

Sadly, children living with chronic illnesses are at risk of forming faulty behaviors and are struggling with anxiety or depression. These faulty behaviors may include not taking their drugs and avoiding appointments. Behaviors like these, as well as anxiety and depression, can worsen treatment results and reduce quality of life.5

But there are ways to help kids through these tough situations and help them develop ways to cope. Child psychologists can be very helpful for both kids and families. They can:5

  • Teach effective coping strategies
  • Create plans for keeping up with treatments
  • Help reduce some of the anxiety these kids may feel

Child psychologists can also work with the healthcare team to reduce medical trauma and balance treatment with good quality of life. This not only improves treatment commitment but can also greatly improve mental health.5

If you or a loved one is living with NMOSD or you suspect they may have NMOSD, speak with your doctor for more information.

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