JACK
For a couple months, Mike and I had been noticing that Jack’s right eye was lazy at times. When I took Jack and one of his sisters to the pediatrician for a physical at the beginning of June 2015, the pediatrician didn’t see anything wrong with Jack’s eye. But he asked me to keep a journal of when we noticed it being lazy and then we would check the eye again in a month. At the same appointment, my daughter failed her eye exam. So I decided to take Jack, with his sister, to the eye doctor, just to make sure everything was ok.
A week later, I left the optometrist thinking Jack had cancer.
At the appointment, the optometrist could see swelling around Jack’s optic nerve and problems around his retina. She said he needed to be seen right away by an ophthalmologist and made an appointment for Jack the next day. She also asked me if I ever noticed a glow in Jack’s eye in pictures. That night I went home and looked through our pictures and found several where Jack’s right eye showed the glow. I didn’t know this was an indication that something was wrong.
We saw Dr. Kipp the next morning and, after looking at Jack’s eye, he thought it might be Coats’ Disease and referred us to Dr. Shapiro, a retinal specialist. At this appointment, we also found out that Jack had very little vision in his right eye. We were shocked because you would never know that Jack only had vision in one eye. A week later, we saw Dr. Shapiro, who also thought it was Coats’ Disease, but needed to do an exam under anesthesia (EUA) to confirm. Jack had his first surgery on June 30, 2015. About an hour into surgery, Dr. Shapiro called us to confirm that indeed Jack had Coats’ Disease and he did laser on his right eye. The first laser treatment went really well. Jack is closely monitored by both Dr. Shapiro and Dr. Kipp. Since Jack has very little vision in his Coats’ eye (no central vision), he wears protective eye wear to protect his non-Coats’ eye. Jack had a second laser surgery on November 29, 2016 and a third laser surgery on October 17, 2017 to stop current leaking. He continues to be monitored closely. One would never know Jack had Coats’ Disease. He is a happy, active 10 year old who loves to play basketball, baseball, swim, and play with his three siblings. Coats’ doesn’t slow Jack down!
FAQ
At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.
-
Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:
How do you know that this is Coats’ Disease?
Has your doctor treated other patients with Coats’ Disease?
Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.
-
What Stage of Coats’ Disease is he/she in?
Will his/her vision get worse over time?
Will the eye have pain?
Will his/her eye start to turn out? Is muscle corrective surgery an option?
Are cataracts likely?
How likely is glaucoma? (due to retinal detachment)
Is there calcification?
What is the anticipated disease progression?
-
Is there a thorough vision exam available?
Where is the vision affected? (central/peripheral/distance)
Does he/she have depth perception? (3D visibility)
What about the non-Coats’ eye?
To what extent is his/her vision affected?
Will we be able to use this as a baseline to measure progress/decline?
