karlperkins
9 posts
Oct 28, 2008
3:55 PM
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Hi,
we have got 3 years old son who has been diagnosed with stage 3 Coats disease just a few weeks ago.Our younger son had his 1st birthday party few days after that and we have noticed yellow eye on the photos of him as well.We checked through the photos and found out that there is one photo of him with yellow eye at the age of 4 months, one at the age of 7 months too.Now he is 12 months and we keep on getting yellow eye in photos reasonably often( sometimes its greyish), we have got about 8-10 photos alltogether.We are so so worried that he got Coat's too, but how could he if it's supposed to be non heridatory disease?Has anyone heard that Coat's got genetic link for sure?What if our 3 years old son was misdiagnosed?We went to see opthalmologist and he said to us that our son got clear retina when dialated eyes.He didn't give us explanation for the yellow eyes photos though so we going to seek 2nd opinion in few days.Any thoughts are appreciated as currently we live in hell.
Last Edited on 28-Oct-2008 3:56 PM
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Nanbnan
4 posts
Nov 12, 2008
4:06 PM
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I am not even going to pretend to know even half of what a lot of people on these message boards know but I do know that our sons Dr told us the the yellow eye in a photo could/should be and indicator that something is not right. When we went and looked at photos after that info...sure enough his left eye was yellow in the pictures. His good eye was normal or red. I did go through some guilt with that because I remember thinking that if I would have only paid attention to that small clue maybe we could have saved some of his sight in that eye.
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karlperkins
21 posts
Nov 13, 2008
2:27 PM
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We saw Mr John Hungerford (the best specialist on Coat's and RB in UK and very kind man) on Monday and he reassured us that our younger son hasn't got Coat's so we are relieved.(This was already our 2nd opinion).
Unfortunatelly there seems to be other ( less serious) problem and we were referred to another specialist for now.We will take it step by step.
Last Edited on 17-Nov-2008 9:38 AM
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Robin20
1 post
Nov 16, 2008
7:48 PM
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I have been reading about this disease and realize that it mainly occurs in small children. Are there any adults that have been diagnosed with it recently, as I have? I am 48 years old and was just curious.
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orangerze
4 posts
Nov 17, 2008
4:41 PM
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My husband was just diagnosed with it. He is 26.
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karlperkins
24 posts
Nov 27, 2008
5:02 PM
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Hiya,
it has been 4 doctors ( 3 out of them privately) checking our younger sons eyes when dialated and all agree that there is no sign of Coat's disease.We do hope they are right.
The yellow reflection on the photos could be unlucky angle of light.We were told on average every 6 weeks child comes over for check up with yellow reflex on photos and at the end of the examination the result is negative for Coat's or RB.
Last Edited on 27-Nov-2008 5:03 PM
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