Child with vision disorder

  WOW! This is what i have been looking for! I would love to talk to and discuss with other parents our sons visual imp. Our son has Nystagmus (involuntary rapid eye movement), that I actually understand. We all deal with that great. The other disorder that our son deals with is a sensitivity to light. MAJOR sesitivity. I know most people say that he's probably albino well he's not. He is three years old, smarter than the dickens, he is a big child, he is a very sensitive child. our son has so much trouble seeing in the daylight. We keep the blinds closed at our house, we play outside after the sun goes down, if we do go outside he wears sunglasses to block out as much light as possible. We are dealing with probable sone dystrophy as well, but again that doesn't seem to be the problem unless the two or three have something to do with each other. We have started schooling him already at the age of 2 because we were afraid that this disorder would affect his learning. So far he is learning wonderful he is actually above his age level in some areas. He only sees 3" to 18" in front of him. All reading material has to be within 3-6" in front of him. Our son has never seen the sunset or a sunrise,an airplane in the sky, or a boat out in the water, he is "legally blind according to the Dr. we are seeing. The Dr.'s name Dr. France University Eye Clinic in Madison seems to be very helpful and we trust him, but we are not getting anywhere finding out the reason for the disorder and ARE WE THE ONLY PEOPLE IN THE WORLD WITH THIS???? I have more to tell if you'de like to hear, contact us??

[HFHS MD JL]

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Well it sounds as though you have the right attitude.  Certainly you are in good hands in that the University of Wisconsin has a well respected ophthalmology department.  I trained in Milwaukee and there are two good pediatric ophthalmologists there, Drs' Mark Ruttum and Jane Kivlin.  By your history, it sound as though your son suffers from a cone dystrophy which can be associated with nystagmus and light sensitivity.  The cones are the cells in the center of the retina that help us see the best.  There are many different types of cone dystrophies and I am not an expert in this field.  If your son does have one of the more rare disorders it may be hard to obtain much information on what may precipitate this - scientists may not know.  Good luck.  Keep up the good attitude.
This information was provided for medical educational purposes only.
Sincerely,
HFHS M.D.-JL