I had no idea what I was looking at, and in retrospect I should have acted right then,” James’ Mom stated. “But I had been faithfully taking him to the pediatrician and no one said anything about it.”
James’ vision had been normal and he didn’t show signs of pain or discomfort.
When he was 18 months old James went to the doctor for an allergic reaction to a medication he had taken. As the pediatrician was examining James he noticed that something was not quite right with James’ eye. The pediatrician recommended that James go to a pediatric ophthalmologist for further evaluation.
The pediatric ophthalmologist determined that James’ eye muscles and vision were fine, but his left eye was pulsating.
“Your eyes don’t pulsate, your brain does,” the pediatric ophthalmologist said.
The next step was for James to see a pediatric neurosurgeon. James and his parents met with three pediatric neurosurgeons before finding just the right fit for them. Initially James went through two CAT scans with two different doctors.
Along the journey of finding the right pediatric neurosurgeon for them, James underwent two CAT scans and he, along with his family members, was tested for neurofibromatosis. Luckily, the test results were negative for the rare disease neurofibromatosis.
It turned out that James’ eye socket was not fully formed and this was causing the alarming appearance of the eye.
“One of his eye socket bones was missing (never formed), and his brain tissue was growing into his eye cavity and pushing on his eye.”
James’ orbital reconstruction surgery was performed on January 22, 2008. Thankfully, James was able to come home four days after surgery.
“His legs were weak from being in bed, but he thought he could walk, so it was very hectic trying to keep up with him and catching him before he fell,” his mom said.
Just eight months after his orbital reconstruction surgery, James had strabismus surgery because his left eye was turning. After surgery he began wearing a patch each day for six hours a day.
“At first it was a struggle to get him to keep it on, but after a while he got used to it,” his Mom said. “The patch became a part of our daily routine just like getting dressed, eating breakfast, etc.”
Shortly after that James was prescribed glasses.
James is now seven years old and is doing very well. Although he is on a proclaimed “patch holiday” he actually missies patching now. He misses it so much that James’ pediatric ophthalmologist allows him to wear the patch for a short time periodically.
“I cannot praise his doctors and the hospital staff enough," James' Mom said. "THANK YOU for caring so much about James, and for helping us all though his treatment.”