KINGSTON
On June 15, 2020, our son Kingston was diagnosed with Coats’ Disease. It all started with a glow in his eye when he was six months old. We immediately made an appointment with his primary doctor and were referred to an eye specialist. On June 15, we were told he had Coats’ Disease and we were clueless as to what it was. We were told he had no vision out of his right eye and the retina was detached with a lot of fluid.
Kingston had his first surgery after his birthday in July of 2020. Everything seemed fine until the second check-up appointment. We received the bad news that the fluid returned. Kingston then had another surgery in October of 2020. And again, the same thing happened. We were then referred to a practice in Chicago where Dr. Chau examined Kingston. He performed a more serious surgery in December of 2020 and that didn’t work either. The surgeries didn’t stop and he had additional procedures in January, April, and June. Kingston has had six eye surgeries at just one year of age. We have been told his case is very aggressive and need to think fast to save his eye. On June 4 2021, he had a 5 1/2 hour surgery that reattached his retina and drained all the fluid inside and out. On his one-week follow up, we received great news that everything was still looking good and he could start to get a little vision in that eye. We follow up for his one-month visit soon and are praying for the same news.
It has been a very long journey, but Kingston still smiles through it all and that’s what keeps us going.
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.
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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.
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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?
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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?
