Coat's disease

Joshua woke up a couple of days ago with slight blurry vision and a small grayish blue spot in his vision in his right eye. Because of some history of a hole in his retina, we went to see the eye doctor that morning. After dilating his eyes he sent us directly to a retina specialist. He saw some abnormal blood vessels in the back of the retina that were leaking and causing swelling.

The retina specialist saw the same thing and diagnosed this as Coats disease. Upon learning more, we found out that Joshua was born with these abnormal blood vessels and they typically start to show problems at this age. Sometimes even younger. There is no cure, only treatment. If it isn't caught and treated it can cause blindness.

Needless to say it was a huge blow to us all. We had a very emotional couple of days, saw a second specialist to confirm the diagnosis and treatment, then proceeded with laser surgery last night.

Basically, they try to seal off and essentially kill the blood vessels that are leaking with either heat (laser) or with a cold cryogenic process.

Joshua was an awesome patient, very brave. He had to deal with a needle in the eye to numb the area and about 15 minutes of laser. He said it was like looking at a strobe light in a disco. He was very anxious to just get the treatment done and move forward.

At the doctor's office, right after receiving the lidacaine to numb his eye.

It looks like he was punched in the eye

We are done for now and we won't know how well the treatment took for weeks. The leaking and swelling should slowly reduce and in the best case scenario his vision will return to normal. He may need more laser and/or cryotherapy at a later date. This is something we will have to monitor for a very long time.

If you google Coats Disease you will find lots of scary stuff.  The good news is that we caught this fairly early in the progression.  It is extremely rare.  We looked for someone around here that specialized in it. There simply isn't anyone.  We would have to travel to Duke or John Hopkins to find someone that is a true specialist. Our retina doctor worked at both those Universities and does have experience with this condition. He said he has worked on roughly 50 cases throughout his career. This is his third this year, but he hadn't had any the last few years. The other cases were also boys about Joshua's age.

Here is Joshua this morning. He looks pretty normal actually. And the only pain he has so far is a swelling/pressure feeling in the eye.

Thanks to everyone for your thoughts and prayers.