The best thing I've learned about nystagmus after three years of speaking to hundreds of people and studying the research is that nystagmus does not define someone. It's just a visual condition. People with nystagmus are not disabled, they are differently abled.
I know a boy with nystagmus who has hit ALL his milestones from 0-3. He is brilliant, determined, and sweet. I don't think he'll have any problems getting on with life because his parents care for him, technology will help him see more, and he will have help at school if needed.
There are also good stories about many visually impaired people overcoming blindness to achieve financial freedom and independence.
Nystagmus from Early in Life
Early onset nystagmus often accompanies vision loss acquired at birth or soon after and may be one of the first signs that a child has a loss of vision. Studies suggest 1 in every 1000 children have nystagmus. In 80-90% of cases, it is a side effect of vision loss from eye diseases such as albinism, aniridia, optic nerve hypoplasia, achromatopsia congenital cataracts, coloboma or retinopathy of prematurity. This type of nystagmus is usually observed around the sixth to eighth week of life and is rarely seen before then. In about 10-20% of cases, it presents with mild vision loss not associated with other diagnosed ocular diseases. The discovery of nystagmus in a child is reason for an immediate examination!
The typical nystagmus related to vision loss during childhood is a pendularnystagmus. The eyes rotate back and forth evenly, much like a pendulum. Patients with early onset nystagmus do not notice the movement of their vision when their eyes shake. Although nystagmus is associated with early vision loss, it may vary from stress, emotional status and direction of view. It is uncommon to permanently worsen over time. In fact, nystagmus often improves mildly from childhood to adulthood.
Most cases of early onset nystagmus are associated with ocular disease many of which are inherited conditions. Genetic counseling can help the patient and family understand the odds of passing the condition to their children. Not all cases of early onset nystagmus are hereditary.
Seeing Tips And Accommodations for Todlers
Does he have a slant board to put reading material on? (The advantage is that a slant board reduces the number of times he has to re-focus in order to actually see a given amount of material.)
What about a ruler under each line of type, or a cutout that displays only one line at a time, to reduce stress from visual crowding? (All the lines can look crushed together for a person with nystagmus).
Has he been taught the trick of rotating type 90 degrees to make it clearer? Especially useful for lines of numbers like zeros. (I still do this routinely when reading lots of numbers.)
High contrast material helps too.
Its essential that he never share a book or any reading material with a classmate. A narrow null point, which he shows all the indications of having, means he can't focus on print at off angles.
A book shared is a book denied to someone with nystagmus.
These days there are laptops and tablets with assistive software on them that many children find helpful too. That's in addition to being able to set them up at the best viewing angle. Also try to obtain the highest resolution screen that you can afford, if you go that route.
Fluorescent or LED lighting is hard on our eyes as well. I find that many high quality fluorescents are ok, but low quality ones are murder, as are LED's.
The goal is to use any method or device which reduces the number of times he has to refocus in order to see a given amount of material, as well as reducing the strain from trying to see when the visual crowding on each line kicks in.
I don't get much visual crowding any more, but when I do there's this reflex that just seems to automatically kick in and I find myself straining like crazy to see the letters. As an adult, I know enough to stop, rest my eyes for 30 seconds, look out the window, rotate the text if necessary. He might not know that, and honestly its a tough reflex habit to kick. You do have to remind yourself not to, or at least I do.
As for glasses, if his eyes are stressed and his N is acting up, they may not help. But you'll really only know that for sure if you make an appointment with an optometrist for late in the day when his eyes are stressed, and have him tested then. Try to find one, if you haven't already, who specializes in difficult cases like Nystagmus.
Let us know how you make out.
All the best,
Sandy Stevenson.
66 INS
Dyslexia/reading disability vs. neural-visual deficits – http://www.thevisualprocess.com/wp-content/uploads/2015/06/Dyslexia-Vs-Neuro-Visual-symptoms.pdf
Stories of Hope For Nystagmus Kids
Maxine Smith No one should ever tell u what u should or shouldn't do for your own child. I also want to tell you that my son with nystagmus (caused by ocular albinism) never had surgery. He has mild nystagmus. Had a pretty good head turn when little, straightened itself out pretty much and his vision is 20/40 with glasses. His vision improved until age 9. You do what's best for your little guy and ignore the negative people.
Thorough Nystagmus Research
http://omlab.org/Teaching/teaching.html
Material for Teachers
http://nystagmusnetwork.org/wp-content/uploads/2016/04/Nystagmus-Network-booklet-for-teachers-email-version.pdf
Dr. Hertle Testimonial
Do whatever you can to get your son in to see Dr. Hertle. Regular doctors know nothing )or very little) about Nystagmus and neither do most ophthalmologists.
I will never regret the determination I had to get my sons the help they needed. And they have never stopped thanking me.
Over 10 years of following the nystagmus email list-serve (through Yahoo groups) and reading and discussing so many aspects of their N and what could be done and by whom with people who participated (and still participate) in that list – all brought me to Dr. Hertle with amazing results for my boys.
The local pediatric ophthalmologist I first took them to thought they had ocular albinism. I went on to a specialist at Wills Eye Hospital in Philly PA who immediately told me they did not have ocular albinism – they had congenital nystagmus and there wasn't much that could be done for it. My twins were under a year old at that time.
I read everything I could get my hands on and over the course of 10 years I read about more & more people taking their children to Dr. Hertle with great results. I read every piece of information on him I could find. And when I finally returned to the workforce full-time and had insurance that would cover, we made our way to Pittsburgh (where Dr. Hertle was at the time) for a consult and came back a few months later for the surgery.
My boys had 20/200 vision prior to the surgery and a head tilt position with the chin up, which would eventually have caused a lot of neck strain and potentially back problems. After surgery the null point was gone, no more head turn, and best of all their vision, fully corrected with glasses or contacts, improved ti 20/50. They both got their drivers license and went off to college without the same type of visual issues they had growing up.
Carol Witte
I am now a few weeks post surgery and I have been noting different improvements and such since then. However, today, I had a big one I'd like to share.
For the first time ever, I saw rain. I looked out the window and I could see the drops of water falling from the sky in hundreds and hundreds of long thin streaks against trees and buildings from my office on the 3rd floor of our building. It's just awesome. I've never seen it like this before. I'm just about in tears.
Thank you for accepting my request to join this group. I am hoping I can help others by my experience and also seek advice.
My daughter Emily was diagnosed with horizontal congenital nystagmus when she was 6 weeks old. She is almost 15 years old now. Her best corrected vision is 20/100. Back in 2002 when she was diagnosed, there was not a lot of information available. I remember staying up late at night crying and doing hours of research. Then during the days, I would see her continue to thrive and exceed all of my expectations.
Emily has never acknowledged that she has a disability and has never once let it get in the way of what she wanted to accomplish. She was given many accommodations through school but has refused to use any of them.
Emily has always been a straight A student, she is a perfectionist, has been recognized as a leader by her coaches, teachers, and peers. She is an overachiever in everything she puts her mind to. She has been involved in sports since she was 3 from gymnastics, swimming, tennis, LAX, soccer, and cheer. She is an amazing competitive cheerleader, winning Allstars national titles and making Varsity Cheer as a freshman this year.
This summer we learned that for her to be able to drive, she would need to be fitted with a bioptic lens to wear on her glasses. As her mom, I was so happy to hear this, as I never knew if she would be able to drive. For Emily, this was a lot for her to process. She now has to acknowledge that she is different from her peers and wear a lens with a mini telescope implanted on her glasses.
We have seen two specialists this summer with differences of opinions on the type of lens they recommend for her. I feel challenged deciding between the lens that allows her to see close to 20/20 but she would be so embarrassed to wear or be seen with it vs a lens that would get her to 20/40 but it's not as noticeable. To drive in our state she would need to see 20/60 or better in at least one eye.
If anyone has had a teenager get fitted for a bioptic, I love to hear about your experience.
Thank you,
Suzanne
Chinese Medicine and Accupressure – https://dsdaytoday.blogspot.com/2014/01/treating-nystagmus.html?m=1
Hopeful thread – https://community.babycenter.com/post/a30593951/nystagmus_anyone
Nystagmus For New Parents
For the new parents who've just joined, some basic facts about Nystagmus: 1. There are 49 sub types of this eye condition. Some have exactly the opposite effects of others. The classic example is someone with Horizontal Pendular Nystagmus, who gets better vision when he closes one eye, versus someone with Fusion Maldevelopment Nystagmus Syndrome, (FMNS), whose Nystagmus gets much much worse when they close one eye.
So what helps one form may make things worse for another form. It is also possible to have more than one subtype in a person. I have both Horizontal Pendular and a small amount of Rotary Nystagmus. It is also possible to have both Infantile Nystagmus Syndrome (INS), aka CN, and Acquired Nystagmus.
There are three main ways in which someone with Nystagmus has vision that is different from yours, if you have 20/20 best corrected. – One is that the movement makes things less sharp, like a movie projector out of focus. For children born with the condition, the world doesn't move; the brain compensates for that. If you acquire Nystagmus later in life, the world does move, which makes it much more difficult to live with than even when you’re born with it.
There is also one angle of view for a nystagmite where vision is sharpest. This angle of view shows up as the angle at which a nystagmite holds their head to see best. This is called a null point, or null gaze angle. With normal sight, you don't have this. Everything is sharp, no matter what angle you look at it from; up, down, left or right. A nystagmite will use one of these directions all the time because everything is at its sharpest there. In my case, the null angle is 45 degrees straight down from horizontal. For others, it can be left, or right, or up, or a combination of left and up, etc, or it can be straight ahead. That happens to some people too. –
Three is speed to see. Depending on how much the Nystagmus interferes with our ability to focus, we may take from a 1/100th to a half a second to a full second for things to become sharp when we shift our focus from one object to another; say from a table top to the street outside. These three different but related problems with a nystagmite's vision are why just the normal eye test isn't enough to measure our vision. It only captures one third of the quality of our vision.
For you, however, there's no point in the other two tests we need, because you'll always score perfectly on them.
Child development: Babies are not born with perfect sight. Even with perfect eyes, full vision isn't developed until the age of 3. During that time, the brain's connection with the eyes is still developing. So it may be some months before your child shows evidence of a null point, and it may fluctuate until it eventually settles down into a consistent angle over the first few months or years. This varies a lot by individual.
Causes: If it's truly a Nystagmus at birth, then in extremely rare cases, it can be due to a brain tumour, which is why a lot of pediatric ophthalmologists have an MRI done in order to rule this possibility out. This is so rare that one should not worry about it; if your doctor orders an MRI he or she is just being very careful. Other than the tumour, the only scientifically proven cause is a failure of the brain to send the right strength of signal to the eye muscles consistently.
In about half of cases, this failure can be traced to a genetic defect, which can be inherited. The other half seem to be one-off mutations, but that's unproven scientifically. Nystagmus for New Parents Sometimes Nystagmus appears by itself, as in my case. For many others, one of several other conditions such as Ocular Albinism or Retinopathy of Prematurity can appear along side of the Nystagmus. This matters because, if you undergo a treatment for the other condition, it won't help the Nystagmus and if you treat the Nystagmus, it won't help the other condition.
There is only one other eye condition that always appears with one of the sub types. If you have FMNS, you will always have some amount of lazy eye, or strabismus.
Duration: Except in the case of one sub type out of forty nine, Spasmus Nutans, it's life long. Spasmus Nutans disappears by the age of 5 in most cases, and by 10 for others. But it is often a source of false hope, because if Nystagmus is rare, it is even more rare. Moreover, one of the senior researchers into Nystagmus has proven conclusively that the only certain method for diagnosing Spasmus Nutans is to have a special form of eye movement recording done which generates a graph called a wave form recording. Spasmus Nutans has a unique graph shape.
How does it progress? It doesn't get worse overall. It usually gets better. It will flare up more strongly when one is tired, or emotional, or under the influence of some drugs. But those are short term. In many cases, it diminishes somewhat in the first 2 to 3 years of life. It is usually a bit worse during adolescence due to the hormone changes going through the body, but it will settle sometime before the age of 22.
After that the movement diminishes gradually over the decades. But the reduced movement does not improve vision. It does help when dealing with other people, however. If the Nystagmus gets worse for a prolonged period of a few weeks or more with no obvious emotional reason, it is reason to see a doctor and check if something else is going on. By itself, Nystagmus isn't fatal and won't lead to blindness.
Treatment: There is no cure for Nystagmus. The one that does the least harm is contact lenses. Soft and hard lenses will both slow down the movement and improve vision. Soft lenses have been tested and shown to be better at damping the N than hard. No one has really proven why, but the best guess is that its because the soft lens drapes over a larger surface area of the eye.
I haven’t seen any papers showing the effects of the new types of scleral hard lenses (they are much larger and rest on tear fluid on the white of the eye, not on the cornea or the coloured part of the eye), or hybrid lenses yet. After that, there is surgery to centre a null point, once it's clearly established, or measured by special tests available in only 3 places in the U.S. For most sub types, if this surgery includes or is added to by doing 2 muscles per eye, it has been documented that it will improve at least one and often all three ways in which a nystagmite’s vision is worse than yours. One more key point about the Nystagmus surgeries, known as Anderson, Anderson-Kestenbaum, and Tenotomy and Reattachment: it isn't the slowing of the movement that improves vision. It's the shifting of the timing.
There is a process by which the brain acquires all your sharp images from a tiny group of cells in the back of the eye called the fovea. The process is called foveation. If the movement interferes with that process, then you have poor vision. To the extent that it doesn't, someone with Nystagmus will have good vision. That means that you can have people with large movements and good vision, and with small movements and poor vision. It's all in the timing.
So the best surgical outcomes are those where the timing is improved the most, not necessarily the ones where the movement is slowed down the most. That means that what you want to hope for with the surgery is a big shift in timing, not necessarily a big reduction in movement. [Note that some people refer to these surgeries as a tightening of the muscles. They aren’t a tightening of the muscles. They involve severing and reattaching the muscles in the same Nystagmus for New Parents place (T&R) or in a different place to centre the null (Anderson, and Anderson Kestenbaum).
An older surgery which did involve loosening the muscles should never be done. It had a high failure rate resulting in double vision (diplopia).They are also not the same as a strabismus surgery, even though that is also an operation on the eye muscles. ] However, results vary a lot from person to person. Some people get 3 lines on the eye chart plus a wider null point and faster speed to see. Some only get a wider null and faster speed to see; with no gain on the eye chart. Also, it doesn't work for all sub types, and if the special test mentioned above, called an eye movement recording, producing an NAFX wave form, shows a sub type that it won't help, then it shouldn't be done.
There is another version of this test that produces a NOFF wave form, which is suggested to be equivalent to the NAFX. Other forms of eye movement recordings exist, but they do not produce the same results as these two, and are therefore not as useful. All surgery has risks, however, and, although bad outcomes are rare, they have happened, and it's recommended to be very cautious about seeking this treatment. The latest trend in research is drugs used as eye drops that are as good as the surgery. The problem is, when the ones we know about are used at strong enough doses to be useful, they have dangerous side effects that can permanently damage the eye. However, new ones are being studied. If researchers find a safe one, then that would be better than surgery. But that's a big “if”, at the moment. This condition can, as you can see, get complicated pretty fast. However, as I said, it's not fatal, and lots of folks lead a good life with it. There's lots of good advice on this page from other parents and adults with the condition, on how to help your child with it, from infancy to college, and you should feel free to take advantage of that help.
All the best, Sandy Stevenson 63, INS. PS: lots of doctors still call it Congenital Nystagmus, or CN, but most current researchers in it call it Infantile Nystagmus Syndrome, or INS, because they feel that the new term describes it better. You'll see both from time to time, and they basically refer to the same condition.
Some information from Dr. Hoyt, a 75 year old neuro opthalmologist at UCSF (rated #1 in California), who has been seeing nystagmus patients for over 40 years, that you might find interesting.
* About 10% of people with nystagmus just have nystagmus and no other ocular issues (20% was the figure given by our PO). This is called “idiopathic nystagmus” or “ocular motor nystagmus” that may have results from a spontaneous mutation of gene or a recessive X linked chromosome
* Nystagmus is not a degenerative or progressive disorder. It gets better over time. In two years, we should see a slowdown in eye movement ,and in four years, the eye movement should slow down even further as visual acuity and brain pathways develop. Some of his nystagmus patients continue to see a slowdown in movement and improvement in visual acuity into their teens. As an older person, you're also able to control your eyes better. But it's good to hear the slowdown in eye movement is mostly a natural improvement. By 2nd or 3rd grade, most people can't tell someone has nystagmus, if they just have nystagmus.
* For those with idiopathic nystagmus, their visual acuity is expected to be 20/25 – 20/40 vs. our best corrected vision of 20/20 – 20/25. In other words, such folks should be able to drive, go to college, and do a lot of normal things we do. The only thing he won't be able to pass is becoming a military pilot exam.
* +3 is normal for a baby at 7 months old. It takes about five years for the eyes to find their final distance vision. There is a huge range, but whatever the near sighted or farsightedness is of your child, it takes about 5 years, and then even then, the eyes continue to change in adulthood.
* Contacts seem to help folks w/ nystagmus, and can be tried when the child has the ability to take them out and put them in on their own. Schools no longer have nurses (need to double check private schools). Hence, perhaps contacts can be tried as early as 7-8 years old. Contacts cover the entire eye, so it may help visual acuity as the eyes moves vs. eyeglasses, where there are different thicknesses and curves along the lense.
* If no family history of nystagmus, then this could be a spontaneous mutation, therefore no higher risk in having nystagmus if you have other children compared to anybody else.
* A baby's eye is 13mm long when born, and nearsighted eye is roughly 23mm long in adults. Hence, the eyes continue to grow tremendously over the first 5 years. If two parents are nearsighted or farsighted, the chance the baby will also be near or farsighted is 60%.
* Regarding ocular albinism: every baby is born with very little pigment development in their eyes (retina). The traditional way to look for ocular albinism are: holes in iris, transillumination areas, or problems of optic nerve, or problems with retina itself. At least 16 different forms of albinism. Can't be certain until about a year, when they will check again.
* I asked if the VEP/ERG tests necessary? No. ERG for retinal problem. VEP if think something wrong w/ optic nerve or sometimes diagnosing albinism. MRI only for optic nerve/tumor worries.
* I asked about visual exercises at home to work on. No exercises are needed to help develop his eyes. They will develop on their own.
* Dr. Hoyt's #1 advice to us: Don't worry. We will wonder why we ever worried about him so much five years from now. I've gotten this feedback from a lot of parents.
Best of health and progress to your little ones! For more information, here is the American Nystagmus Network.