Nystagmus

Nystagmus is an involuntary, repetitive movement of the eyes. Parents may describe their baby’s or child’s eyes as shaking, wiggling, bouncing or moving back and forth.

Nystagmus can begin during infancy or develop later in childhood. How it affects a child’s vision, and whether additional testing is needed, depends on the type of nystagmus and its underlying cause.

Because nystagmus can sometimes be the first visible sign of another eye, neurologic or genetic condition, children with newly noticed nystagmus should have a comprehensive eye examination.

What Does Nystagmus Look Like?

With nystagmus, the eyes move involuntarily rather than remaining completely still while looking at an object.

The movement may be:

• side to side (horizontal),
• up and down (vertical)
• rotational
• a combination of movements

The speed and amount of movement can also change depending on where a child is looking, whether the child is tired or stressed, or how hard they are concentrating on something. Parents often notice nystagmus while feeding their baby, taking photographs or videos, or watching their child’s eyes closely.

Infantile Nystagmus

Infantile nystagmus syndrome (INS) begins during the first several months of life, often becoming noticeable between about 6 weeks and a few months of age.

Some children have infantile nystagmus with otherwise healthy eyes and no other identified eye disease. In other children, nystagmus develops because something has affected normal visual development.

Conditions associated with nystagmus in infancy can include:

• albinism
• retinal disorders
• optic nerve abnormalities
• pediatric cataracts
• significant refractive errors
• other genetic or developmental eye conditions

Part of the pediatric ophthalmologist’s job is determining whether the nystagmus is primarily an eye-movement condition or a sign of another condition affecting the child’s vision.

Does Nystagmus Affect a Child’s Vision?

It can, but the amount varies considerably from child to child. Some children with nystagmus have relatively good functional vision, while others have more significant visual impairment. Often, the underlying eye condition has as much, or more, effect on vision than the eye movement itself.

Children who develop nystagmus during infancy generally do not experience the world as constantly shaking. Their visual system develops with the eye movement, and the brain adapts to it. This is different from nystagmus that suddenly develops later in life, which can sometimes cause the environment to appear as though it is moving or bouncing.

Why Does My Child Turn or Tilt Their Head?

Some children discover that their eyes move less, or their vision is clearest, when they look in a particular direction. This position is sometimes called a null point or null zone. Instead of constantly looking sideways with their eyes, a child may naturally turn or tilt the head so the eyes can remain in the position where the nystagmus is quieter. This is not simply a habit. A consistent head turn or tilt can provide useful information about how a child’s nystagmus affects their vision and may become an important consideration when discussing treatment.

Can Nystagmus Become More Noticeable Sometimes?

Yes. Parents may notice that their child’s eye movements seem stronger when the child is tired, upset, excited, concentrating intensely or looking in certain directions.

That does not necessarily mean the condition is suddenly getting worse. However, a new change in the pattern of eye movement, or nystagmus that appears for the first time in an older infant or child, should be evaluated.

What Causes Nystagmus That Starts Later in Childhood?

Nystagmus that is newly acquired after infancy is different from typical infantile nystagmus and deserves medical evaluation.

Acquired nystagmus can be associated with eye disease, neurologic conditions, certain medications or other medical problems. Depending on the child’s age, examination and symptoms, additional testing or evaluation by other specialists may be recommended. The American Association for Pediatric Ophthalmology & Strabismus advises that anyone with newly acquired nystagmus be evaluated to determine the cause.

How Is Nystagmus Evaluated in Children?

A pediatric ophthalmologists at Children’s Eye Care of Michigan look at much more than whether the eyes are moving.

The examination may evaluate:

• how well each eye sees
• the child’s glasses prescription
• eye alignment and eye movements
• whether the nystagmus changes in different directions of gaze
• whether there is a position where the nystagmus becomes quieter
• whether the child uses a head turn or tilt
• the structures inside the eye
• the retina and optic nerves
• whether strabismus or amblyopia is also present

A dilated eye examination is particularly important because sometimes the explanation for a baby’s nystagmus is found by examining the structures responsible for vision. Young children do not need to know letters or be able to describe what they see for us to begin evaluating their vision and eye movements.

Will My Child Need an MRI?

Not every child with nystagmus needs an MRI.

Whether additional testing is appropriate depends on when the nystagmus began, what it looks like, the eye examination, the child’s vision and whether there are other medical or neurologic findings.

Some children may need additional testing such as imaging, retinal testing, genetic evaluation or laboratory studies to help identify an underlying cause. Others may not. The goal is to choose testing based on the individual child’s findings rather than automatically performing the same tests on every child with nystagmus.

Can Nystagmus Be Treated?

Treatment depends on the cause and on how the nystagmus affects the child.

Glasses or Contact Lenses

Correcting nearsightedness, farsightedness or astigmatism can help a child use their available vision as well as possible. Some children with nystagmus benefit from contact lenses as they get older.

Treating Associated Eye Conditions

If a child also has amblyopia, strabismus, cataracts or another eye condition, that condition may need its own treatment.

Medications

Certain medications have been studied for some forms of nystagmus, but medication is not routinely appropriate for every child. Potential benefits have to be weighed against side effects and the specific type of nystagmus.

Will Nystagmus Go Away?

Infantile nystagmus usually does not completely disappear. The appearance of the eye movement may change as a child grows, and many children learn naturally how to use their vision effectively.

The more important question is often not “Can we stop the eyes from moving?” but rather “How well does this child see, is there an underlying condition we need to address, and is there anything we can do to help the child use their vision more effectively?”

Can Children With Nystagmus Live Normal, Active Lives?

Yes. Many children with infantile nystagmus participate fully in school, sports and everyday activities. AAPOS notes that most children with infantile nystagmus can live active lives. A child’s individual needs depend on their visual acuity and whether another eye condition is present. Some children may benefit from sitting closer to the front of the classroom, larger print, electronic magnification or other school accommodations.

Teachers should also understand that a child who turns their head to see may be using the position that gives them their best vision—not refusing to look straight ahead.

Pediatric Nystagmus Care at Children’s Eye Care

Evaluating nystagmus in a child requires understanding both pediatric eye disease and eye movement disorders. Our pediatric ophthalmologists and certified orthoptists evaluate children’s vision, eye alignment, eye movements and head positioning while looking for eye conditions that may be contributing to the nystagmus.

When additional testing or evaluation by another specialist is appropriate, we can help families understand why it is being recommended and what we’re looking for.

If you notice that your baby’s or child’s eyes repeatedly shake, wiggle or move back and forth, or your child develops a new unexplained head turn or tilt, a pediatric eye examination can help determine what is happening and whether additional evaluation is needed.

Frequently Asked Questions About Nystagmus

Does my baby know their eyes are moving?

Babies with infantile nystagmus generally aren’t aware that their eyes are moving in the way that an adult might imagine. Because their visual system develops with the nystagmus, they typically do not experience constant “shaking vision.”

Will my child’s eyes shake more when they are tired?

They can. Nystagmus may become more noticeable when a child is tired, stressed, excited or concentrating. Parents often become very good at recognizing when their child’s nystagmus is more or less noticeable.

Why does my child’s nystagmus look different in videos or photographs?

Eye movements can change depending on where your child is looking and how intensely they are focusing. A short video can actually be helpful during an appointment if you’ve noticed an eye movement at home that isn’t obvious during the examination.

Is nystagmus hereditary?

Sometimes. Certain forms of infantile nystagmus and some of the eye conditions associated with nystagmus have a genetic basis. In other children, there is no family history.

If the examination suggests a genetic eye condition, your child’s pediatric ophthalmologist may discuss whether genetic evaluation or testing would be helpful.

Should I make my child straighten their head when they turn it to see?

Usually not.

If your child consistently turns or tilts their head while looking at something, they may be positioning their eyes where the nystagmus is quieter and vision is better. Mention the head position at the eye examination rather than repeatedly correcting it at home or school.

Can nystagmus cause learning problems?

Nystagmus itself is not a learning disability. However, reduced visual acuity can make it harder for some children to see small print, distant classroom material or visually detailed information.

Understanding a child’s actual visual function allows families and schools to provide appropriate accommodations when needed.

Should I be worried if nystagmus suddenly starts in an older child?

New nystagmus is different from eye movements that have been present since early infancy.

If your child’s eyes suddenly begin moving involuntarily—particularly if there are other symptoms such as dizziness, difficulty walking, headache, weakness, vomiting or other neurologic changes—seek prompt medical evaluation.