Jacob’s appt. with retina specialist

Jacob had his appt. with the retina specialist, Dr. Aarberg. Although I knew to an extent what we would hear from him, it did not make the appt. any easier.  He did confirm what his eye specialist had seen. What he saw is consistent with Batten Disease. Jacob is in the early stages of degenertaion with his eyes. I asked him what this means as far as Jacob’s vision goes. He said at this point, Jacob would have a harder time seeing at night. My heart sank to hear him say it. He is a wonderful Dr. and took the time to explain some things to Rob and I. He did have a better way to explain to us on how the blindness occurs with this disease.  He had a model of an eye and he was trying to show/tell us what happens. He does have experience with Batten Disease which is helpful. He did say most Dr.’s never see a case of this in their entire career. I can believe that since his previous Neuro has had a career over 50 years and only had one case. Dr. Aarberg did say he has seen another case with Batten in this early stage with their eyes before. We were able to get some pictures so we have our baseline. He wants to see Jacob back in 6 mos.