Coats' Disease Resources - Who are we?

Our family

We are the Mitchell family. We are not affiliated with any medical organizations. Our son Cory was diagnosed with Coats' Disease in March of 2002.

Our story

At first we noticed our three year old son Cory rubbing his eyes a lot. Since this new habit seemed to happen mostly at night, we figured he was just tired from playing too hard. However, our suspicions grew when we noticed one eye seemed to wander outward. We immediately set up an appointment with an opthalmologist.

Talking to our son about his eyes was frustrating. When we asked if his eyes were ok, he always responded with a simple yes. Did he know he had a problem? Was he too afraid to talk about it?

The retina specialist who first examined Cory said that the lesions in the retina looked like signs of infection by Toxocara canis - a roundworm which is a dog parasite. The eggs from the worms can be ingested and hatch inside the human body. The newly hatched worm then can migrate to body organs, even the eye where blindness can result. Toxocara cati is the scientific name for the worm that cats get, and can spread. We told him it would be impossible, as we have neither cats nor dogs, and we never allowed Cory to play with dogs or cats as an infant. He then told us that in that case, the lesions were probably due to Coats' Disease.

Cory's opthalmologist found scar tissue, and referred us to another opthalmologist who made the Coats' disease diagnosis in March 2002. We immediately hit the internet in a desperate attempt to learn all we could about Cory's problem. We were told that the deposits in his eye were getting worse as time passed, so prompt treatment was essential.

We searched everywhere to find the best doctors, looking at medical websites, bulletin boards, and published articles. We also talked to opthalmologists. We found two leading experts on Coats' Disease, in the state of California where we live.

The first specialist worked at a well respected medical school. Since that specialist was described as having an excellent bedside manner, we contacted his staff for an appointment.

We immediately ran into an impasse. The busy clinic had no openings for three months! Fortunately, our local opthalmologist pulled some strings so we were able to get in immediately. However, the delays continued. Each office visit started with a two or three hour wait. On one of our visits, after waiting for hours we were sent home because an angiogram could not be performed. Considering that each visit took a half day of driving each way, our frustration level quickly escalated.

We broke ties with that doctor when he suggested delaying the time critical cryotherapy, and first trying steriod injections. Although the suggested treatment was highly experimental, this recommendation was made with no discussion of the odds of effectiveness, and no discussion of side effects.

Days later we were in the office of Marc O. Yoshizumi, M.D. at Jules Stein Eye Institute, UCLA. This clinic is also highly ranked. Although Dr. Yoshizumi was our second choice, we will forever consider him the best of the best. His friendly staff got us an appointment just a few days after we contacted them. After waiting just ten minutes, we went into the examination room.

Dr. Yoshizumi performed cryotherapy in April, and then performed follow up cryotherapy in September. Before and after both surgeries, and during each office visit, he has been very supportive.

Cory's eye is stable for the time being. After the first surgery treated most of the leaking vessels, most of the heavy deposits were gradually resorbed by the retina. A few smaller leaks appeared, which often occurs. The follow up surgery treated the remaining leaky vessels. His eye will never be perfect, but the goals were to stop the majority of the leaking and regain as much eyesight as possible. Now we are patching Cory's good eye every day to increase the chances for vision improvement in his affected eye. We have turned patch time into fun time involving games, dancing and other activities. The affected eye is light-sensitive, so Cory always wears sunglasses.

Updates

October 12, 2003

Cory was examined at the end of July of this year. All the deposits have cleared from the retina. His vision has improved to 20/100. He wears protective lenses with some correction in his left eye, and we are continuing to patch his right eye (four hours per day is what was prescribed). Hopefully there will be even more vision improvement. We did not patch for a while after his last visit, and his eye showed some outward drift again. This tells us that it is critical to keep patching while his little brain is still growing. Thanks to all who have offered wishes and prayers for Cory's improvement!

April 20, 2004

Between annual check-ups by Dr. Yoshizumi at UCLA, Cory is monitored by a local pediatric ophthalmologist. Last August his doctor ordered glasses for him, mainly for protection of his good eye. He ordered glasses with some correction for his affected (left) eye too. In December we noticed his eye was drifting outward again, and even more than ever. When his eyes were tested again in February, Cory's doctor told us there had been a pretty drastic change in Cory's left eye and that it was even harmful for Cory to wear those glasses because now the lens was much too strong for his eye, and he really couldn't see much through it. His behavior at school had even degraded. Amazingly, his vision changed from 20/80 to 20/70 in six months - a tremendous improvement. His new glasses work great and we continue patching his good eye. We are now seeing less outward eye drift as well.