My daughter has been seeing eye specialists since a baby and had her first surgery at 1 but they just diagnosed her with Coats on October 20/08 yet she has had four surgeries...how did they miss this??? She is completely blind in her eye but had sight at one time and now I am told she is at high risk for eye removal. She is only 10 and I am so sad for her.
How did they miss it?Well,most of the doctors never seen it before, remmeber it's very rare disease.Our son was at regular eye check ups as he had a little squint since he was lesss than 2 years old, we took him to really good clinic, it was obvious he can't see back in June, but me as a mother ( who's cousin had squint corrected with glasses!) I only believed he will need glasses.There were 4 visits in space or around 18 months and only at the last one it was discovered, that he 'does not need glasses', but...I don't think I will ever forgive those doctors for doing this to my son.He is in stage when he got light perception only and how could this be missed by specialist?Well, specialists usually know only as much as we do.Sad, but truth.It's funny, opthalmologists in the hospital haven't had a clue that 'this could be Coat's', but then when I took him to Boots ( once he was diagnosed) to try to give him eye check and those optometrists knew what Coat's was and gave me some advise!
Hi my son was diagnosed with coats disaease on Feb 08 he is seven now when they discovered it his vision was 200/400 he had almost no vision they did tell me he was at risk for enaculation but with intensive treatment they would try to save the eye they did laser treatment avastin injection they placed silicone oil for retinal attachment and they also placed a scelera buckle to help keep the retina attached his last treatment was Oct 31 2008 Friday his vision is 20/80 at this point which is a miracle and his next surgery is on Nov 21st I beleive that your daughters eye could be saved you need to get a doctor who knows about the disease and has done research they are usually opthomologist specialized in oncology because of the treatments they give to coats diasease patients are similar to those of cancer. Please let me know if I can help you with anything.
I don't know how they missed it. I do not understand how they operated 4 times since one year old and diagnose after all her vision is lost and she is on the brink of eye removal. The doctor she sees is a specialist and seems very knowledgeable, I will ask more questions when I see him next. My daughter, Caragan is still home from school, her surgery was two weeks ago and I have to give her 4 drops 4 times a day, her eye looked so awful.
Thank you Alex, saving the eye is now my biggest concern, I am just so perplexed that it has gotten to this. She could see out of the eye at one time and now is blind. It is hard to explain to a 10 year old that she might have her eye removed, although we are really good humored about it and are trying to keep it light so that it will be easier for her to deal with. I think I might be with the right doctor as his goal is to save the eye as well and is thinking about VEGF injections.
