Found out today that my son was diagnosed with coats. We dont know what stage he has due to we haven't seen the specialist yet. We went in thinking he had coats by the photos he recently had took. We had looked online researching yellow reflection in his right eye in photos and coats popped up. Today we were finally told by the optometrist that he has coats. For those who went through the treatments what are we to expect? Do they work? How do we as parents explain or talk to our child about it? His vision is about 20/250 in his right eye. Will it stay that way or get better with the treatments? Any info will help. Thank You.....
You really can find a lot of info on this site. Read as many of the threads as you can. Most of us are going through the same things with our children. You will find if you read that our children differ quite a bit with the treatments. It will all depend on how your child's body reacts to the treatmnets on whether he get his vision back, it stays the same or it gets worse. Your doctor (the specialist) will be able to tell you more about what stage he is in and how he thinks you should go forward. There is a thread on here somewhere that tells you a list of questions you should be prepared to go to the doctor with. Make sure you bring a pad of paper as it will be hard to remember everything they say. Don't be afraid to ask and look for a second opinion. The more you know about this disease the easier it will be to talk to the doctors about what is going on with your son. Another thing I have found very helpful is that I keep a file with me that has all of my son's medical info about his eye as we see multiple doctors in different states so we always have the most current info with us. After each appointment we ask the receptioist to photocopy the days notes and any tests or pictures so that we can put it in our file as well. It will be very helpful if you ever have to go to an emergency room somewhere as most docs have never heard or do not know much about this disease. If you ever want to communicate with me via email or phone just post here and I will be happy to exchange! Good luck with everything. Keith's Mom
micah33, If you go to page 2 of the message board, there is a topic called Initial Questions for the Doctor, or something close to that. As Keith's Mom said, ask any question you want here, one of these great parents will answer it. Also, go into every doctor's appointment thinking that you are the only true advocate for your child. Most times, that will be the case. Question everything, and don't just accept the answer. Learn as much as you can about Coats' Disease, here or anywhere else you can find. Knowledge truly is power. I can't tell you how many specialists and professors I wrote to for information. We wish you the best, and everyone that posts here will support you.
