Our Nystagmus Journey...the beginning, the middle...

[FONT=Comic Sans MS]...but no end yet. I know we have a few kiddos here who have Nystagmus and I am sharing our experience in the hope that it benefits someone else. My DS was adopted at eight months old and we realized as soon as we got back from trip one that he had somethingђ going on with his eyes. Once we were home we were informed he had Nystagmusђ and that he would probably have vision issuesup to being legally blind. (This was in his original referral paperwork but not on the paperwork we received at referral...but that's another story.) It was heartbreaking to hear those words but eventually we accepted it. We also got overwhelmed with other struggles our baby was facingŅand he seemed to see just fineso it became a non-issue at that point. We had regular eye exams with several pediatric ophthalmologists over the next five yearsŅexcept his five year old exam. We loved the first ophthalmologistbut movedŅfound another great one but had to change due to insurance issues. This doctor did not click with DS and DS fought the examsso it was easy to őforget his five year old check up last year. Plus the ophthalmologist could never get a good look at DSҒs eyes as he refused to open themit was awful and traumatic. Again we had many other issues going on with him and he continued to be functional in a well lit, normal size roomŅalthough he had an abnormal fear of the darkso it was easy to push this appointment off. DS started a special needs pre-K in 2007 at age four and no one noticed any issues with his visionŅother than the Nystagmus. He also completed almost the entire year of Kindergarten (again special needs) with no questions regarding vision. Although, when I got his standardized testing results this spring I got that little feeling in my gut that we may need to address the Nystagmus in his soon to be updated IEP. But DS was beginning to read, writing better (still delayed but worlds better), and doing grade appropriate work. In April of this year DS had to get an eye exam due to being diagnosed with Juvenile Rheumatoid Arthritis and being ANA+. JRA has an associated eye disease and being ANA+ puts DS at a higher risk of eventually having uveitiswhich can lead to blindness. So the pediatric rheumatologist recommended an immediate check of DSŒs eye. Thank God for JRA! (Never thought Id say/type those words.) We were sent to the ophthalmologist we used just after we moved҅we had changed insurance carriers again and this doctor was now available to usyay because Dr F is a keeper for certain. Nystagmus is often a symptom of other eye issues and conditions. Nystagmus can be a őstand alone issue (Congenital/Infantile/Idiopathic/Motor Nystagmus) but it is often a symptom of other serious ocular issues (sensory based Nystagmus.) [/FONT][FONT=Comic Sans MS]

[FONT=Comic Sans MS]ғNystagmus 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 pendular Nystagmus (my DS has this movement.) 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. (DS's eye movement has decreased quite a bit.)

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.

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My son has serious vision lossԅhe is 20/150 and 20/50 WITH glasses. He is 20/150 and 20/60 without glassesbut he has astigmatism (common) so the glasses do help him see better. Just a note hereŅ20/150 is the second linethe one under the big E on the eye chartŅso hes just one line away from being legally blind in his right eye. We are patching his left eye three hours per day҅but we just started patching on Monday and while DS was technically only five when we startedit just a technicality as he turned six on Tuesday. I so wish we would have known this soonerŅlike at age 3, 4 or 5so that he would have a better chance of having the patching work. But we also have no idea if there is any chance of that eye improving anywayŅif it is sensory basedit most likely wonŒt improve. We are now looking to get his base diagnosis, if this is not Congenital/Infantile/Idiopathic/Motor Nystagmusthe őwhy of his Nystagmus҅and these are serious eye issues. There is always a chance he does have Congenital/Infantile/Idiopathic/Motor Nystagmus and 'simple' vision lossbut the doctor has two other thoughts that would put him into the sensory based Nystagmus realm of dxŒs. The frontrunner is Congenital Stationary Night Blindness (a retinal disorder) and we are setting up testing (electroretinography) for that at Bascom Palmer Eye Institute in Miami in the next few months. Bascom Palmer is tops in the US so it takes a while to get in...and honestly the end dx is not that important right now. We will also be able to tell if he has the ophthalmologists second thought҅partial Achromatopsia (also retinal.) But DS is not typically color-blind based on standard testsbut due to some of my observations on what colors DS sees bestŅthis is a contender. My long winded point isbe proactive on with this. DonŒt be lulled into a false sense of contentment because your child appears to see fine. I was certain DS did NOT have vision losshe really had no issues with daily life. If you donŒt think the ophthalmologist (a must, btw) is a right fit for your child or experienced enough or whateverget a second opinion. While some kids do not have vision issuesŅthe vast majority do. Some of those involve seriously reduced visionup to being legally blind. In the end, regardless of his final DXŅDS is still DSa child with endless possibilities who will not be defined by his disabilities. His future is brightŅmaybe blurrybut still bright. **I tried not to get too technicalŅand took some liberties while simplifying. If anyone has more specific questionsIŒll be happy to try to answer them.**[/FONT]