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We are stumped!!!

My son is 14 and started having problems with his vision a few years ago. I am frustrated because we went to neuro opthamoligist, retina specialist and many other vision specialist and still have NO diagnoses! They even presented him in front of a board of Dr's which means he pretty much had about 40 Dr's look at his eyes in a few hour period. They have said he has cone distrophy, which to my understanding is pretty much an umbrella term...His vision has only effected his left eye up until now, last night he said it was starting to get bad in his right eye as well. He sees only in black and white in his left eye. When asked to describe his vision he said "better yet I can show you" He took a picture of me with his cell phone then went to photo enhancements and put it on sketch, this made it completely white with only a fine black out line. It was very hard to recognize myself in the picture. He said that was how every thing looks from his left eye only the white is more like cotton and blurry. His right eye is now starting to loose color and blur. Have you ever heard of any thing like this?

There are currently 4 replies


Re:We are stumped!!!



hi;
that def sounds baffling, i have never personally heard of what may cause such a condition. Was wondering if you've checked into Wills Eye Hospital of Philadelphia. They have some of the most renown eye doctors in the world there.
also concerned with right eye, may not be developing the same causal condition as the left, it may just be becoming sympathetic? Something for doctors to consider, which clearly i am not, to patch the left eye for a few hours a day for a few weeks and see if it gets better.
best of luck and prayers to your son.
Mike


Re:We are stumped!!!



Mike, thank you so much for responding. I am actually having a hard time finding a Dr who will see my son. In all the test they have done I keep hearing "I dont know but there is defiantly something different about that eye" The vision problem started in 3rd grade whith him complaining of the ground smoking and seeing shadows, his pediatrician said it was prob allergies... Then when he was in 7th grade he did not pas the vision screening at school so we took him to a regular eye Dr who asked if he had diabetes because there was some puckering in the macula. So that started a long line of specialist who cant figure it out, the puckering is gone but now there is just something odd about his eye and sometimes they see deposits or flecks. But still no diagnoses. One Dr actually diagnosed cone distrophy in both eyes even though there was no sign of vision problems in his right eye. My concern with his left eye is that the colors fading was how the actual vision loss and quick deteriation of his right eye started. I would agree with patching his eye and will talk to one of his Dr's about that. Again thank you. :)


Re:We are stumped!!!



I've had similar experience trying to find the answers because my vision fluctuates I've gotten a lot of doctors that were too proud or rather errigant to say I don't know and instead they said it was in my head and it absolutely is not
I've gotten a diagnosis of optic nerve atrophy it is just strong enough to get me what I need . I wish I had a diagnosis that told me why but I'm happy knowing where the switch is
I hope you have better luck
Lindsay


Re: We are stumped!!!



Not sure if you will see my reply but wanted to in case you check. I do not know where you reside but the Massachusetts Eye and Ear Infermery has some of the best doctors in the world.


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