harry
1 post
Feb 10, 2010
12:00 AM
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hello everyone
My nephew is 9 weeks old and doctors said he has Coats. As i stay away from their place, i dont have first hand information from doctors.i was just curious to know if anyone here has experienced or seen such a case.or can anyone let me know what stage he could be in(with respect to the stages given in homepage) and any chances of recovery.i am totally new to this topic and came to this site on my first google search and wanted to share seeing all your lovely help to each other.
Last Edited on 10-Feb-2010 12:04 AM
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Dunc & Frank
22 posts
Feb 10, 2010
9:07 AM
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Hi Harry,
Our son was basically born with Coats. And from the moment of his birth it progressed very rapidly. You can read of our story on this website if you paste the following address into your browser:
http://www.coatsdisease.org/board/board_topic/2684224/435548.htm
It is extremely rare to have Coats at 9 weeks old, but only a specialist doctor will be able to tell you what stage Coats your Nephew has.
Our doctors suggested that our son was the first reported case anywhere in the world of Coats in a new-born baby. But having read all the posts on this website I'm not sure that's true - but it certainly is very rare.
I can't comment on the chances of your Nephews recovery. All I do know is that early treatment is vital to maximise the chance of regaining any eyesight. If the retina detaches it needs to be reattached very quicky. We were too late.
I know I have not been much use to you, but your story struck a chord with me as your Nephew and my son were both very very young when diagnosed. Whereas most on this sight developed Coats after several years old.
Like you, prior to our son being diagnosed, we knew nothing about Coats, and a lot of what we know now came from this sight.
Please let me know how your Nephew gets on, and I am hoping for the best for you.
Regards,
Duncan
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Mateo16
5 posts
May 12, 2010
7:56 AM
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Hi Duncan, my son was also born with Coats he is now one. His retina was completely detached when we was diagnosed at 1 week old. We've been told that there's no treatment was this also your son's case? Did you son's coats eye cross in? has he had surgery to correct that and which procedure? Are you able to post some pictures?
Thank you,
Pati
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Dunc & Frank
29 posts
May 12, 2010
9:29 AM
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Hi Mateo,
The progress of my son's Coats was so rapid that the doctors said trying to do any kind of surgery to drain the exudate, stop it, and re-attach the retina would be completey futile. I'm not sure what you mean by "cross in" but I can tell you his Coats eye moved in perfect sync with his good eye. But he didn't keep his Coats eye for long - he had it removed when he was 2 months old. Our son is now one also (well 14 months) - I guess your's and ours were born around the same time (9th March 2009 for us). Apparantly Coats from birth is very rare. Where are you from?
Regards,
Duncan
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Jacobs Parents
263 posts
May 12, 2010
12:11 PM
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Mateo16,
Our son was diagnosed at stage 4, with no chance of recovering any vision. His Coats' eye has never tracked very well with his non-Coats' eye. We asked about surgery to straighten his Coats' eye, but his surgeon advised against it. Jacob is completely OK with his eye as it is, so we do not see a need to put him through another surgery. None of the children in his school have ever commented negatively on his eye, or made fun of him. It's funny how young children just accept people as they are. We should all be that way....
If your specialist thinks it is safe (and wise) to do the corrective surgery at such a young age, I don't see any reason not to have it done.
If Duncan wants to send pictures of Campbell to me, and he doesn't mind putting them out there for the world to see, I will figure out a way to post them on the website.
Last Edited on 12-May-2010 12:12 PM
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Mateo16
6 posts
May 12, 2010
2:23 PM
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Thank you Duncan and Jacob's Parents. My son's eyes both move together when he's looking around but most of the time it looks like he is crossed eyed but only on his coats eye which is the right one. We were told that it happens because there's no vision in the eye and since it stays crossed in a majority of the time Dr. Shields who is his doctor recommended to look into corrective surgery and find out when it can be done.
We live in Maryland, I was born in Ecuador and my son's father is Dominican.
Thank you
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endcoats
5 posts
Oct 23, 2010
10:36 PM
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do THE MAJORITY OF COATS PATIENTS LEAD TO enucleations
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Dunc & Frank
30 posts
Feb 07, 2011
2:53 PM
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Mateo16, it's been a long time since I have been on this site, but I was wondering how your son is getting on. Our doctors reccommended enucleation whereas it appears your's have allowed your son to keep his eye. I was interested to understand what you have been told by your doctors in terms of what might be expected to happen over the next few years.
If you are still visiting this site I would be grateful if we could exchange some information.
Best Regards
Duncan
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WesleysMom
2 posts
May 15, 2011
12:18 PM
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At my sons first visit with Dr Mukai at Mass Eye and Ear in Boston we discussed enucleations when talking about the possibility of Coats. He told us they have a new procedure that they can do to avoid enucleation. I don't remember specifically but it has something to do with the nerves that cause the pain. I know that's not very specific but we have not discussed it since. He was adamant that Coats doesn't lead to a guaranteed enucleation though.
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