Nystagmus

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Nystagmus is a sign or a symptom of a problem in the brain and/or the nervous system. A pediatric neurologist should be consulted.
Q
My son is ten years old. He has nystagmus. Is this condition curable? He's having difficulties in school as well: Problems concentrating and not doing or completing assignments. He doesn't seem interested in school work. It takes a long time for him to complete his homework. If he completes it fast, which is most of the time, the work needs to be redone or corrected as most of the answers are wrong. He also has poor handwriting. I'm getting frustrated as I can't seem to help him. Teachers are complaining that he's not doing his work. What can I do? My relationship with him is affected as I feel that he can do better.
A
First, I believe that your child, like most of us, is doing the best he can. Children want to succeed; they do not set out to give parents or teachers a hard time. You may well be correct in believing that he is capable of doing better in school -- if he did not have various problems which are getting in the way. However, you do not help him or yourself by telling him he can do better -- until you are certain that you understand what is going on. It is also not helpful for teachers to say he is not doing his work to bother all the grown-ups.

Your son has nystagmus which means that his eyes move involuntarily. Nystagmus is not a diagnostic term. There are different kinds of nystagmus and there are different causes of nystagmus. Besides needing to determine why your son's eyes move as they do, we need to try to determine how his eye movements may be related to the trouble he is having in school. Obviously, many school tasks require good visual skills.

It is unlikely that your son just began to have trouble in school or just began to have nystagmus. Very few children suddenly develop problems in school at age ten. However, troubles in school may become more evident as the demands for concentration and independent written work increase in higher grades. Homework of any kind may be something new and the expectation that he have good handwriting may be very difficult for him. Has he just learned to write longhand? Can he use your computer for homework instead of a pencil or pen?

We need a thorough multidisciplinary assessment in order to determine the causes of his specific problems. Hopefully, you will be able to have your son examined by these different specialists and also have one expert, perhaps your son's pediatrician or primary care physician, help put all the information together and work with his teachers to develop a useful educational plan. Start your search in school. Your son has the right to receive an assessment of his school problems -- but not all the experts are educators. Depending in which state you reside and how Federal legislation is being carried out in your state, you may be able to have the costs of the other experts covered by the Individuals with Disabilities Education Act (IDEA) or by your health insurance. The purpose of the assessment is to develop a plan in school that will enable your son to succeed.

Ask your son's pediatrician about his nystagmus. I suggest that the pediatrician refer you and your son to two medical specialists: a pediatric ophthalmologist and a pediatric neurologist. You can expect the pediatric ophthalmologist to explain the possible causes of your son's eye movements and whether his nystagmus can be decreased. Often, since nystagmus is a sign or a symptom of a problem in the brain and/or the nervous system, we need the input of the pediatric neurologist to help identify the cause of his nystagmus and whether or not such underlying neurological problems are also, at least in part, causing his difficulties in concentration, finishing his work, and his difficulties with handwriting. A psychologist, a specialist in school learning problems and his classroom teacher(s) should also be on the team. Notice that I wrote "in part" above. It will be frustrating, but all these experts may not be certain about the relationship of your child's eye movements, his possible neurological problem and his problems in school. On top of all this, your son probably feels he is not as capable as his peers and this lack of self-confidence further complicates his efforts in school.

Accordingly, while you seek the opinions of the various experts, what can you do to help your son? First, find out why handwriting is considered essential. Today, many schools are encouraging children to use word processing as early as possible. Good "keyboarding" skills are far more important than handwriting. And, while it is handy to be able to spell and write with a pen or pencil, using a word processor with spell checking seems more appropriate nowadays.

Second, can you and your son find activities to do together that he can do well and that you both enjoy? If you have time to spend with your child, spend it doing fun activities -- enjoying board games, cards, or similar activities is much better than the two of you agonizing together over homework.

You did not mention friends. A ten-year-old boy or girl needs to have friends. Do his problems limit his opportunities to make friends?

You are correct to be worried. Your son needs help without delay.

Stanley D. Klein, Ph.D.
Clinical Psychologist

Stanley D. Klein, Ph.D., is the former Editor in Chief of Exceptional Parent magazine. A clinical psychologist and editor, Klein cofounded the magazine in 1971. Klein serves as a Research Associate in Medicine (Pediatrics) at Children's Hospital (Boston), where he teaches health care professionals about working with the parents of children with disabilities, with particular focus on the challenge of delivering difficult diagnostic news.

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