Written by his mother, Jessica.
“I had my son Chace on April 1, 2012. He just turned 10 months and around 3 months of age I knew something was wrong with his left eye. I took him to an ophthalmologist who told me he had retinoschisis, but he was not a retina specialist and immediately referred me to one. I took my son to the retina specialist who told me he had toxoplasmosis. I didn’t believe that so I took him to another specialist that confirmed his diagnosis. My son’s pediatrician then referred us to the infectious disease department at a children’s hospital. They ran the test for toxoplasmosis, it came back negative. They ran it again and came back negative again. Yet they were still determined that toxoplasmosis was the cause. They did a CT scan of his brain to check for calcification and a lumbar puncture to test spinal fluid for the parasite, while he was under anesthesia for these tests they did an eye exam which showed bleeding in his retina.
So after all these showed no signs of toxoplasmosis they started testing him for every virus, bacteria, and parasite that can cause eye problems. In total, about 30 diseases/infections were tested for. Everything was negative and the doctors wanted to start him on medicine to treat toxoplasmosis, of course I said no because every test showed that he did not have it. Also, the concoction of medicines used to treat toxoplasmosis is very toxic, and would have destroyed his young fragile immune system. I went as far to email a toxoplasmosis expert in Chicago, and she had to call my doctors (after she looked at his results) and told them he does not have it.
They finally listened and referred us to the best retina specialist in my state. This specialist did an eye exam and said he too thought it looked like toxoplasmosis. At this point I was sick of hearing this diagnosis. I asked him why everyone is saying he has this parasite? He told me that clinically speaking the lesion in his eye looked like a toxoplasmosis scar. Well he decided to do an eye exam under anesthesia with fluorescence. 2 weeks later when the exam was done we finally got the Coats disease diagnosis. The lesion that every doctor thought was a scar were cholesterol deposits.
He is in the very early stages of the disease, stage 2a. It is only located in the periphery and in October he had his first round of laser treatments. He was put under anesthesia in January of this year and the doctor could see no new bleeding, so he did not need any more laser treatment at that time. He will go back in May for another eye exam.”