NMO in Children and Adolescents

Reviewed by: HU Medical Review Board | Last reviewed: June 2023

Neuromyelitis optica spectrum disorder (NMO) is a disease that affects the central nervous system. NMO breaks down a protective coating around neurons that helps them transmit signals, called myelin. NMO has many clinical similarities to multiple sclerosis (MS) and so initially it can be difficult to distinguish these conditions. NMO is rare but can severely impact a person’s quality of life.1,2

NMO commonly affects young, non-white women. In fact, NMO is more common in women than in men, with a ratio of 9 to 1.1,2

While the average age of onset is 40, around 5 to 10 percent of people with NMO experience onset before age 18. There is less research available on children and adolescents with NMO. But reported prevalences vary from .06 to .22 cases per 100,000 children.1,4

There are many similarities between adults and children with NMO. But NMO in children causes different issues compared with adults who have NMO.1,4

Key differences between children and adults with NMO

Many of the main parts of NMO, like clinical features, are the same between adults and children. However, NMO can look like alternative causes, for example:1,2

  • Other demyelinating disorders
  • Inflammatory disease
  • Autoimmune disorders
  • Infection

Combined with the rarity of NMO, recognizing it in children can be difficult.1,2

One difference between adult and child NMO is the reliability of some of the clinical signs that may suggest an NMO diagnosis. The 2 most important clinical parts of NMO are optic neuritis (ON) and transverse myelitis (TM). ON is caused by inflammation in the optic nerve. TM is caused by inflammation in the spinal cord that spreads to sensory or motor processes.2

When assessing for NMO, doctors look for what is called longitudinally extensive transverse myelitis (LETM). LETM is a specific lesion that they can see on a magnetic resonance imaging (MRI). In children and adolescents, LETM can also be caused by MS or acute demyelinating encephalomyelitis. This can make it a less reliable marker for NMO in children.2

NMO can rarely cause symptoms related to inflammation in the brain, including confusion, seizures, and increased pressure on the brain. This presentation is very rare in adults, but is more common in children.1,2

Another difference between adults and children with NMO is disease course and severity. Earlier onset NMO, according to research, appears to negatively influence the course of the disease. Children and adolescents need to live with the disease for a longer period, which leads to higher risk of accumulation of issues from the diseae over time. Children also experience a higher number of relapses and worse disability than older patients.2,3

Parenting a child with a chronic illness

Living with a chronic illness in childhood can be tough not only on the child, but their family. Sometimes children with NMO develop additional autoimmune diseases as well, like lupus or myasthenia gravis.1,4

The first medicines for adults with NMO have recently been approved by the US Food and Drug Administration (FDA). Due to the rarity of pediatric NMO, no therapies are currently FDA-approved for pediatric NMO. But there are multiple treatments available that can help treat NMO, and many work for multiple autoimmune conditions.1,4

Treatments have become easier to administer and more accessible. Many of them can be given at home. However, this means that parents may take on responsibility for treatment, and need extra time and energy to do everything on top of other responsibilities.4

Research shows that parents of chronically ill children are employed at a lower rate than parents of non-chronically ill children. This can make it hard for parents to balance work-life, home-life, stress, and feeling like they need to ‘do it all.’4

There is a need for further research on some more overlooked aspects of parenting a child with a chronic illness. Data suggests that a child's health is affected by their social, medical, and environmental support. This means that both parents and children benefit from mutual support, compassion, and understanding.4,5

Ask your care team about resources available to support families, like counseling or support groups.4,5

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