Three weeks later, the day before the last day of school, I took Riley to his appointment. We were with the doctor for a very long time. He was asking Riley questions that were alarming to me. He asked me if he had taken a fall, or had a blow to the head. He brought in one machine after another testing things. When the senior doctor in the practice came in, I knew whatever was going on was a big deal.
We were told at that visit that Riley's right eye had hemorrhaged and was full of blood. His left eye did have some infection in it, but the right eye was the primary concern. Some names of genetic disorders were tossed around with some speculations. We were told to go right then and get a prescription for glasses filled and that Riley needed to be still for the next two weeks. Then, we would need to come back for them to check his eye again.
The next two weeks were hard. We left on vacation two days after his visit, a trip to the beach, and we were mainly worried and stressed with the unknowns. We kept Riley as still as possible for a nine year old boy.
Two weeks later we went back and met directly with the senior staff doctor. He looked in Riley's eyes with some fancy equipment and said he could see some improvement, but wanted to see some more. He talked more about genetic disorders and then mentioned a disease specifically that he believed Riley to have.
After showing no improvement at the third visit, he referred us to a retina specialist.
Two days later we sat in another office hoping for some answers. This doctor was very nice and thorough. At the end of the visit he said he needed to be honest and tell us that he really did not know exactly what was going on in Riley's eyes, but that they were definitely both affected. Since Riley's eyes were not improving he wanted to take Riley's case to a National Retina Conference in New York over the weekend and get the opinions of some more retina specialists.
He called me on my cell phone the next day and asked me for permission to present Riley's case to an audience. I agreed.
The following Monday he called to say that he presented Riley's case and it was believed that Riley may have Coats Disease. We were referred to Emory and given an appointment a few months out. The wait was very difficult.
Once at Emory, we met Dr. Hubbard. He examined Riley and within minutes diagnosed Riley with Pars Planitis in both eyes. He used instruments to view Riley's eyes like no one else had before. He took pictures of both eyes so that we would have them for comparison later.
He explained to us that pars planitis affects the pars plana in the eye. If you were to stand inside of the eye and look out from the inside you can see the ring of color around the pupil. The ring around that is called the pars plana. Whenever pars planitis is present, the pars plana produces balls of infection called "snowballs" The accumulation of infection creates a "snowbank." Snowbanks can block the vision or even cause the retina to detach. It can also cause sudden blindness. The cause of pars planitis is unknown and no cure has been found. Treating pars planitis is an on-going process.
From there we were told that Dr. Hubbard wanted to collaborate with some other doctors before making a decision on treatment, because of Riley's young age. Generally this disease strikes in adulthood.
A week later he called with a plan. He wanted to place Riley under general anaesthesia and inject his eye with a steroid shot to help to fight the infection. After the infection was at bay we would know how much damage had been done in Riley's right eye. This procedure was scheduled for November, the week of Thanksgiving.
The procedure itself went well and we went back in January to see if the steroid shot had done it's job. Dr. Hubbard was not pleased, but recommended that maybe we should wait a few more weeks to give the steroid shot time to work.
In the meantime, Riley saw a pediatric ophthalmologist who started Riley on patching his left eye for one hour each day to strengthen his right eye. He had a case of lazy eye.
A few days later Dr. Hubbard called and said that he had met with a team of specialists and they had a very aggressive plan to present. It would be difficult for Riley, but may save his vision. If we chose not to go through, his retina was likely to detach. He wanted to do three more procedures on Riley's right eye, each six weeks apart. The first was in February, one in late March and the last in May. The first two would include the same steroid shot with the addition of cryotherapy. Cryotherapy is the freezing of the eye. The hope was to kill as much of the infection as possible.
The last procedure would be to surgically remove the layer of infection that had hardened over Riley's macula causing a macular pucker. As it was, when Riley looked out of his eye it was the equivalent to trying to look through a white dryer sheet. He could see some light and specks of color, but mostly the white infection in his eye.