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after 2 years of testing, scans, specialists, we still have no solid diagnosis!

Hey there. Our son continues to baffle the doctors, so I'm reaching out here, hoping someone can help.

Our son (2.5 y/o) was born a healthy baby. He had a seizure at 6 months old, which was misdiagnosed as a febrile seizure.

When he was about 7 months old, my Mom said she didn't think he could see very well, so we contacted a vision therapist from the School for the Blind and had vision testing done. He could see! He was able to track and make eye contact. He might not have had perfect vision, but he did have some.

At 9 months old, he had a second seizure which resulted in him losing most of the vision he did have. He has undergone numerous testing, including CT scans, MRI, VEP, genetic testing, EEG, and retina measurements. Everything has came back normal.

Anatomically, he is perfect. There is nothing wrong with the optic nerve, the eye, or the brain, it just doesn't seem to be working together. He also has nystagmus in both eyes. The first pediatric opthamologist we took him to actually said, "well, it looks like he can't see". Ya think!?

They put him the the category of "Cortical Vision Impairment" but then they preceed to tell us, "We don't think he has CVI". They have no idea what is going on with him, or why he can't see. We know that he has light preception and can see some forms (as he finds his sippy cup, paci, toys...all by walking right to them.)

If anyone has any advice or information on where to go or what to do to get some sort of proper diagnosis, please help! If you need more info on him, I've got it!

I can be emailed at mackabelly@hotmail.com. Thanks so much and sorry for the book!!

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Re:after 2 years of testing, scans, specialists, we still have no solid diagnosis!



Hi, I am an ophthalmologist from İstanbul. I wonder if your son is under stress. What about family relations?
İs there any problem within the family?.
What about his hearing?
Have you tired him to look at your face , with red lipstick, in a dark room, lightning your face only.
İf no reaction, I advice you to visit an experienced pediatric ophthalmologist and a child neurologist.


Re:after 2 years of testing, scans, specialists, we still have no solid diagnosis!



Hi, I am an ophthalmologist from İstanbul. I wonder if your son is under stress. What about family relations?
İs there any problem within the family?.
What about his hearing?
Have you tired him to look at your face , with red lipstick, in a dark room, lightning your face only.
İf no reaction, I advice you to visit an experienced pediatric ophthalmologist and a child neurologist.


Re:after 2 years of testing, scans, specialists, we still have no solid diagnosis!



I hope you get a diagnosis soon. It must be very frustrating.


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