Update on Cole's progress ~ Appointment with the Neuro Opthalmologist

One of the recommendations the neurosurgeon made after our appointment last week was to make an appointment with an ophthalmologist to confirm there is no pressure on his brain.  One way this can be tested is to look at his optic nerves through an eye exam.  I had already made an appointment with a neuro ophthalmologist at John's Hopkins in the hope of getting connected with recent research being done on optic nerve regenerations.  So we met with Dr. Kraus today and Cole and I absolutely LOVED her.

She had a great bed side manner and worked very well with Cole.  She teased him about looking into his eyes with a special machine to see when he last ate ice cream.  Cole was very excited to see how this would work!

She was very patient with all my questions.

1. The first was regarding new information that I recently learned about a possible risk of developing glaucoma which could cause blindness.  She said that although this is a possibility, he is not at a higher risk for it.  
2. My next question was about his increased risk for retinal detachment later in life because he had Retinopathy of Prematurity.  Although she confirmed that he is at a higher risk than other children, she said that they essentially "cemented" the retinas when he had his laser surgery and the hope is that this will be enough to keep them attached.  
3. I also asked her about whether Cole would be a good candidate for Prisms - a special type of glasses that could help him.  She said that she didn't think they were necessary.  If anything, he may need surgery later to correct his nystagmus.
4. I also asked her opinion about getting a walking cane and braille.  She said that she doesn't think he needs a cane but we would know better based on how he's navigating his environment.  Unfortunately we had an issue yesterday where he ran toward a yellow race car that was inside the mall that had a railing all the way around it to prevent people from touching it.  He was running so fast he didn't see it and ran right into the bar and fell.  He recovered well, but it is always heartbreaking when I can't get there fast enough to stop him from getting hurt.  Regarding  Braille, she said she agrees that he needs to learn it. Although she feels his vision is relatively stable, she said it would be helpful for him.  Although I was disappointed to hear this, we had a great conversation about how it could be incorporated into school.  So instead of him learning all his lessons in Braille, he would learn Braille almost like learning a second language.  We will need to talk this over with his vision specialist at school and his low vision specialist, but I'm feeling a little better about a possible path.
5. I also asked her to look at the optic nerves and see if they showed pressure on the brain which may indicate shunt issues. Luckily she said no!
6. Most importantly I asked about the optic nerve research program. Unfortunately he is not a candidate since it is being done only with adults.  However, she said that there is hope that new information will be available over the next few years that could benefit the pediatric community.
7. Another conversation we had was regarding his visual acuity.  We noticed that he would say he can't seem something but when pushed for a reward he all of a sudden was able to see it.  This seriously makes me question whether we have an accurate measure of his capabilities.  Although it is frustrating that he would just say he can't see it when he can, I love the idea that he may see more than previously thought based on the Low Vision exam.  The doctor said there is an exam called a Visually Evoked Potential where they place electrodes on his head and measure the brain activity when given visual stimulus.  Although not something I think we need to do now, it's nice to know the test is available if we ever need it.

Overall we had a great appointment and she asked us to follow up in 6 months.  We will need to determine if we decide to follow up but I expect we will probably continue with our current ophthalmologist.  Although very disappointed Cole is not a candidate for any follow along study, I feel a little more at ease with the thought of adding Braille to Cole's tool box, rather than having it become a way of life.  Time will tell whether that is the direction we take and whether that's a good choice.