Appointment at Emory Today!!!!

It has been a whirlwind day. We loaded up the kids, dropped Myck off with friends in Phenix City, Alabama, and drove up to Atlanta.

Emory is HUGE. It is a research/teaching hospital. There are medical students everywhere. There are at least three different giant buildings, each housing various hospital departments, including Emory Eye Center. We finally found parking on the 6th level of the parking garage, made our way to Building B, and found Emory Eye Center in the middle of level 3. The waiting room was packed. It seems like it is an extremely popular place.

We ended up spending 4 and a half hours at Emory, most of it waiting. Since we were a last minute addition to the patient list today, we had to wait an extraordinarily long time to be seen at each stage. We waited in the first waiting room for over an hour before we were finally called back. A nice tech named Lindsay used a machine to get a rough estimate of the refraction in Lynk's eyes (kind of like a rough look at what his prescription would be), and took us back to a room where she gave him a brief vision test, looked at his previous records, and got a lot of information, such as when he started having issues, family history, etc. Lindsay said that today, Lynk was seeing with 20/150 in both eyes!!! 

When Lynk was tested in Columbus a few weeks ago, he had 20/250 vision. The only reason we can think of for such a big difference what that in Columbus, the optometrist did Lynk's vision test after dilating his eyes, not before. At Emory, they did his vision test before they dilated his eyes. He hates eye drops, but he was a trooper through it all, and was much more cooperative than he normally is during appointments.

One of the photos of Lynk's eyes! This was one that Lindsay took. The black stuff at the bottom are Lynk's eyelashes.

After Lindsay put in the drops to dilate Lynk's eyes, she took us to a second waiting room to wait while his eyes dilated. While we were waiting, we talked with a lovely English woman who has Macular Degeneration and has to have eye injections every month. I swear, she was just the sweetest person. After waiting an extremely long time, a lady named Christine came and got us to do photos of Lynk's eyes. I have no idea what types of photos they were, but she used two different machines to take three sets of photos of each of Lynk's eyes. It was difficult for him, because he not only needed to stand perfectly still, but he couldn't move his eyes. She wasn't able to get good photos because he was squirmy. She finally gave up and said that Dr. Jain may just have to work around not having good photos.

She took us back to the waiting room once again. Eventually, a young doctor in a white lab coat came for us. Turns out, he was Dr. Wilia, Dr. Jain's resident. Basically, he's gone through medical school, but is doing his residency at Emory. He's kind of like an assistant doctor. He looked over Lynk's file, looked at his eyes a bit, asked us more questions (especially whether Lynk or anyone in the family had ever gotten genetic testing done). Then he said that Dr. Jain would be in.

Shortly after, Dr. Jain arrived with a young man toting an iPad. I think the guy with him was an assistant of some kind. He didn't say anything, just kept typing on the iPad. I think he was transcribing everything we talked about. 

Dr. Jain told us a lot. He said that Lynk needs genetic testing done to see exactly where the genetic mutation was. (Click on this link for more information about the genetics involved with Stargardt's) It would tell him more about what Lynk has, and would definitively tell him that Lynk had Stargardt's. He said normally, he wouldn't diagnose someone just by looking in their eyes like Dr. Wilkes had diagnosed Lynk. Normally, several tests are done, and the information from all of them are put together to come up with a correct diagnoses. Dr. Jain really wants genetic testing done. Lynk is a bit too young to do some of the other tests needed, including a vision field test, which measures the severity of central and peripheral vision.

ERG Test Being Conducted

Lynk eventually also needs and ERG, or electroretinography test. It's where they stick an electrode (like a contact lens) onto his eyes, with another electrode on his head. They then send flashes of light through the one on his eye, so they can control what his eye is seeing, while the second electrode determines what the eye is seeing. Apparently they can get a lot of information out of that test. But they want Lynk to wait until he's 8 years old to do it. If we did it now, he'd have to be put under general anesthesia because he's just too squirmy at 6 to tolerate it. Dr. Jain said the risks of anesthesia don't outweigh the benefits of doing the test now.

Lynk is too young for an ERG right now, and Dr. Jain said he is also still too young to be considered for clinical trials. Right now, there are clinical trials underway for both stem cell treatment, and gene therapy to treat Stargardt's, but Dr. Jain said they are in the early stages yet. Here is some more information about the research going on right now --> STARGARDT TREATMENT RESEARCH

Dr. Jain did have us re-do Lynk's eye photos. Turns out Christine was pretty new, and they wanted someone more experienced try to get good photos of Lynk's eyes. Dr. Jain said he could use the photos to eventually check the progression of the disease. He does a lot of research into progression of inherited retinal diseases, so he definitely wanted to make sure we had good photos. So a nice guy named Matthew tried, and was able to get some good shots of Doodle Bug's eyes. We don't have to go see Dr. Jain again for a year. But he did put in our notes to schedule an appointment with Low Vision.

Because Lynk is only 6, there is only one low vision doctor who will see him as a patient. Unfortunately, Dr. Primo also teaches at Emory, and doesn't have much time to see patients, so her schedule is pretty packed. The first available appointment they had was for January 11, 2017. It's such a long wait. But there's really not much we can do to get Lynk in earlier because she has such limited clinic hours. We did, however, get put on a wait list in case there is a cancellation. So all we can hope is that someone cancels their appointment, and we are able to take the vacant spot. Now is when we need to pray for patience, and an open time slot in Dr. Primo's schedule!