Have you ever seen an infant whose eyes appear to dance or wiggle uncontrollably? The condition is called congenital nystagmus, or more accurately “infantile nystagmus.” Congenital means you are born with something, and technically speaking, this kind of nystagmus can appear anytime in the first few weeks-to-months after birth. So, it is referred to as infantile nystagmus.
There are different types and causes of nystagmus. I’m generally addressing the infantile form here, but for the sake of completion, note that other conditions (e.g., metabolic disorders , stroke, trauma, tumors, etc.) can also cause nystagmus.
Nystagmus causes problems with vision because the brain can’t process dynamic activities like motion, depth, and contrast. The pursuit system (the part of the brain responsible for holding the eyes steady) is the area of the brain most affected. This pursuit system is supposed to stabilize the eyes when you want to look at something.
- Distant staring: In the very beginning (first few days-to-weeks), there may be distant staring while the infant is trying to get the visual system to work.
- Wiggly eyes: The actual movement is a repetitive beating to the side (if it’s “horizontal”) or up and down (if it’s “vertical”). This develops over the next few weeks. This is very easy to see, you won’t miss it.
- Head tilting or turning: This is done to help improve vision
How is nystagmus diagnosed?
As the parent, you won’t miss if your child has nystagmus. When your child’s eyes are beating uncontrollably, you’ll seek medical care. Your pediatrician will then help get you in to see an eye specialist, called an ophthalmologist (different than an optometrist, the ophthalmologist is a medical doctor and can perform surgery). What will the ophthalmologist do?
- History (what’s going on, pregnancy and birth history, family history)
- Physical exam
- Testing—behavioral and electrophysiologic testing (specific types of tests done to help evaluate different eye functions)
- Usually the diagnosis is one of exclusion, meaning you’ve ruled out all the other causes.
There are many treatment potentials. The ophthalmologist will explore the different options with you based on the determined cause. Options can be any of the following:
- Medical (medications)
- Optical (glasses)
- Surgical (on the eye muscles)
Treatment is usually most successful when initiated early. Generally speaking a “wait and watch” approach is a bad idea. It is worth noting that some types of nystagmus improve with time.
What is the long term prognosis?
Unfortunately, I don’t have a simple answer on this one. Congenital or infantile nystagmus is often (roughly 70% of the time) associated with other eye problems (e.g., lazy eye, cataract, etc.). The prognosis is entirely dependent on what else is involved in the scope of the problem.
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