August 6, 2020 "Pediatric Neuro-Opthalmology"

We have always tried to make sure Rayden got the very best care possible. His specialty care has always been at UNC but we have taken him for second opinions at Duke, and Shriner's before. So when Dr. Grace, pediatric opthalmologist, wanted us to take Rayden to Duke for another opinion, we didn't have any issues with it. But due to the Corona Virus he could only have one adult with him so I had to take him alone. Luckily, Rayden is a 'big boy' now.
We had to wear masks the entire time and we stayed far away from people. The first person that did a little exam on Rayden quickly noticed that he wasn't identifying when things came into his view from the sides (visual field). She stepped out and got a doctor. He did a little exam and disagreed with her. They showed him four colored dots on the wall (2 green, 1 white and 1 red). Rayden counted over and over and swore there were three. He said there were 2 red and 1 black. But when she did the colored blind test he could trace the red numbers inside the green dots with no problem, weird. When Dr. El-Dairi, the neuro-opthalmologist, did an exam she stated that Rayden was too smart for their vision test because he's a good guesser. He would match the letter shown on the card to the one on the wall WITHOUT even looking at the wall!

After dilation, Rayden was taken back to get pictures of his eyes with two machines. The lady doing that swore he had nystagmus because he couldn't focus on one spot long enough for her to take the pictures. I honestly believe its his age and lack of attention, not nystagmus. But she put it on his chart anyway. Dr. El-Dairi said the pictures showed that his optic nerves were scarred but not swollen. He has permanent scarring from his massive hydrocephalus at birth (we knew that). She is requesting his MRI from last week because she wants to see the status of his occipital lobe and see if his third ventricle is dilated. I contacted Dr. Elton, Rayden's neurosurgeon, shortly after leaving and he stated that Rayden's third ventricle is completely decompressed. The scan shows "his occipital lobe is dysplastic, which means is visibly structurally different than what it should look like. Doesn't tell anything about function, but as with anything in the brain, if it is structurally different than what it is supposed to be, then the assumption is that the function of that area also must not be what is supposed to be. We have no way to image any of that, it is all based on clinical examination. Vision is interpreted in the occipital lobes, so if she has vision concerns, it could be related to the way his brain is built."
Dr. El-Dairi believes Rayden may have central scotomas but he's too young for the visual field exam for confirmation. A scotoma is blind spot in your visual field while the surrounding areas appear normal. A CENTRAL scotoma is a blind spot that occurs in the center of your vision. It may look like a black spot for some and for others it may be a blurred smudge or a distorted view in your straight ahead vision. It cannot be corrected or treated with glasses or surgery. You may have to use aids for visual support. She wants him to start patching his right eye for two hours a day again and practice on a visual fields app on his ipad. Next appointment is September 3.