jesse's dad
25 posts
Aug 28, 2008
6:24 AM
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Good morning. I caught this morning that they were running a story about diagnosing eye cancer from pictures. I know many of us were alerted to our children's Coats' in this manner. Hopefully, information such as this will lead to early detection of all childhood eye disorders. Here is the link http://abcnews.go.com/Health/story?id=5670923&page=1. Jesse's dad
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help4coats
16 posts
Sep 23, 2008
11:21 PM
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Hi Jesse's Dad, I saw in a post that you are from Connecticut. I am in Torrington (Northwest corner). I see Dr. Jerry Neuwirth at Hartford Hospital. What part of Connecticut are you from?
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jesse's dad
26 posts
Sep 24, 2008
2:35 PM
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We live in Orange (South of New Haven). My three year old son has Coats. He has a twin sister and we have a six year old. How old is your child? We travel to Philadelphia to see Dr. Carol Shields. We are going back for our sixth cryo/laser procedure this November. We also see Dr. Lavata in Southbury, CT who regulates Jesse's patching schedule. The patching schedule is to build strength in his Coats' eye, not for vision. Gary
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anne-marie
14 posts
Sep 25, 2008
9:30 AM
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Hi Gary, How is the patching routine going? It's been a few months now. As I recall, Jesse has similar vision loss as my son. What type of schedule is he on and what does he do while patched? Anne-Marie
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jesse's dad
27 posts
Sep 25, 2008
7:42 PM
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Hi Anne-Marie, We having been patching every day for two months. Our regimen was 30 minutes daily until this past Monday where they increased it to 45 minutes a day. I guess you could say it is going "well" since our Jesse can tolerate it. We call it a "pirate party" and we try to do fun things with him during the time. It is difficult, because as you know he has almost no vision when patched. That being said we have noticed his Coats' eye appear stronger since we began. Also, he has become very brave with the patch on. He will run across the lawn while holding his brothers hand, he will try to make things out by sight, and does have very limited vision. For example, I took him to home depot and he was able to identify the fridgerators and the lawn tractors. This was real exciting, because we thought he really couldn't see anything. The next time we took him to a store we double patched to make sure his good eye was covered well and he could still identify very large objects and discriminate colors. The doctors were very excited about this and have encouraged us to continue this process. Another observation we have made is his other senses are increased dramatically when he is patched. He touches everything and he can follow a voice or sound. The bottom line is the doctors feel that Jesse may not require surgery to straighten his eye in the future, because we are "strengthing" his Coats' eye. They also told us that between the ages of three and eight are the critical years for a patching regimen. Hope this helps--good luck with your son. We are always thinking about the other families. Gary
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