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Pediatric Neuromyelitis Optica Spectrum Disorder (NMOSD)

Families from around the world come to the Collaboration on Neuroimmunology: Question, Understand, Educate, Restore (CONQUER) Clinic at Children’s Health. We have one of only a limited number of clinics in the U.S. that offer comprehensive care for children with demyelinating diseases. Here, your child has access to top specialists and the most advanced treatments for neuromyelitis optica spectrum disorder.

What is Pediatric Neuromyelitis Optica Spectrum Disorder (NMOSD)?

Neuromyelitis optica spectrum disorder (NMOSD) is an autoimmune disease that can affect a child’s vision, mobility or both.

Autoimmune diseases like NMOSD (previously called Devic’s disease or NMO) occur when the immune system turns against a person’s own body. Typically, the immune system helps the body fight off germs and infections. In some people (and for unknown reasons), the immune system gets confused and attacks healthy cells and tissues.

With NMOSD, the immune system preferentially attacks the nerves in the spinal cord, as well as the optic nerves connecting the eyes to the brain. The optic nerves help a child to see, while the spinal cord is critical to limb movement and mobility.

A child with NMOSD may have one or both of these conditions:

  • Optic neuritis. Swelling and inflammation of the optic nerve that causes pain and vision loss.
  • Transverse myelitis. Spinal cord inflammation that leads to limb weakness or paralysis, loss of limb sensations, and bladder and bowel control problems.

What are the different types of Pediatric Neuromyelitis Optica Spectrum Disorder?

NMOSD is very rare and affects approximately 4,000 Americans and 250,000 people worldwide. Only about 4% of NMOSD diagnoses occur in children, which is why it’s critical to seek care from pediatric specialists like those at Children’s Health℠ who have experience diagnosing and treating it.

There are many ways to classify NMOSD. These are two types of NMOSD.

Relapsing

Relapsing NMOSD causes recurring symptoms. A child may go months or years without symptoms (also called disease remission) and then have weeks or months of symptoms (also called a disease flare-up). There may be some degree of muscle weakness or vision loss in between episodes. Relapsing NMOSD is the most common type.

Monophasic

Monophasic NMOSD causes a single attack on the optic nerves and spinal cord. With treatment, symptoms usually improve but some patients can be left with long-term symptoms.

What are the signs and symptoms of Pediatric Neuromyelitis Optica Spectrum Disorder?

NMOSD symptoms vary depending on whether the disease affects the optic nerve, spinal cord or both. Symptoms most commonly appear during adolescence but may appear as early as the toddler years.

A child with NMOSD may have:

  • Breathing problems
  • Loss of bladder and bowel control
  • Numbness, weakness or paralysis in the arms and legs
  • Pain or vision loss in one or both eyes

How is Pediatric Neuromyelitis Optica Spectrum Disorder diagnosed?

Though NMOSD causes symptoms similar to multiple sclerosis (MS), some treatments for MS can worsen nerve damage caused by NMOSD. That’s why getting an accurate diagnosis is so important. At Children’s Health, we see hundreds of children with demyelinating diseases every year. We have the expertise and the latest diagnostic tools to correctly diagnose the condition and start your child on the right treatment plan.

At our CONQUER Clinic, your child receives care from a team of experts that include board-certified neuroimmunologists. These doctors have advanced training in helping children with autoimmune diseases that affect the nervous system. We perform all diagnostic tests at our clinic. You don’t have to schedule extra appointments and wait longer for a diagnosis.

Our pediatric clinic is among a select few in the country that offers optical coherence tomography (OCT). This painless eye scan provides detailed images of the optic nerves, helping us detect optic neuritis.

Other diagnostic tests for NMOSD include:

  • Blood tests
  • MRI

What causes Pediatric Neuromyelitis Optica Spectrum Disorder?

We do not know the cause of NMOSD. It was once thought to be a form of MS. Our doctors and researchers are active in the ongoing research that has broadened the understanding of NMOSD.

We now know that most children with the symptoms of NMOSD produce autoantibodies (immune proteins) that attack myelin oligodendrocyte glycoproteins (MOG). This protein is found on the outside of cells in the central nervous system and helps protect the myelin sheath. Children with these autoantibodies have an anti-MOG associated disease.

A small number of children with NMOSD produce autoantibodies that attack aquaporin-4 (AQP4) protein. This protein carries water to cells to keep them healthy. Adults are much more likely than children to have anti-AQP4 antibodies.

How is Pediatric Neuromyelitis Optica Spectrum Disorder treated?

As one of only a limited number of pediatric demyelinating disease programs in the country, we offer all of the latest treatments for NMOSD, including:

  • Anti-inflammatory drugs like corticosteroids to lessen inflammation and limit damage
  • Immunosuppressant medicines to calm an overactive immune system and prevent attacks on the nerves
  • Plasmapheresis to remove autoantibodies from the blood and return the clean blood back to a child to limit the damage of acute attacks

Our team of specialists work together to manage all of the effects of this disease, not just the physical symptoms. Our neuropsychologists evaluate memory and thinking skills. They work with our educational liaisons and social workers to ensure your child gets the support they need at school to learn and thrive.

Pediatric Neuromyelitis Optica Spectrum Disorder doctors and providers

Our clinic offers comprehensive care for children with demyelinating diseases like NMOSD.

Frequently Asked Questions

  • Does my child need lifelong care?

    Yes, NMOSD is a lifelong condition. We see your child at our clinic every six months or whenever there’s a disease flare-up. Regular OCT eye scans help us detect optic nerve damage early and protect your child's vision. When your child is 13, we start preparing them for the transition to adult medical care.

  • Who is at risk for NMOSD?

    NMOSD tends to affect more Blacks, Asians and Native Americans. Females are more likely than males to have NMOSD.