Fiona Keller
1 post
Jan 09, 2008
2:09 PM
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Dear all
I have a 7 year old son who is in stage 4 coats disease. He is aware of the strong possibility that his eye may need to be removed. Someone told him that their adult brother had his eye removed and there were screws put into the eye muscles to aid eye tracking. He is now terrified about screws being put into his eye and that the whole thing will really hurt.
Is there any way that I can set up a phone call with someone who has a child with a prosthetic eye, so that we as his parents can get some more information and potentially our son could speak with your child to allay his fears.
I would really appreciate this. My email address is fionakeller@yahoo.com Thank you!
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nancii
2 posts
Jan 12, 2008
12:10 PM
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My son Tristan lost his eye at 7 he is now 9 years old. We would love to talk with you. The only time that they use screws is 1-2 years after surgery if you choose to peg your eye for better movement but this procedure is painful and you could lose your perfectly healthy eye to infection, so you have to be wiling to take that risk for a little more movement. Tristan's eye looks so normal that most people can not tell that he has a fake eye. I can tell you that it looks alot better then his coats eye did in the final days before surgery. There are some things that you will need to know like get some books on tape for him to listen to. Tristan would not open his eyes for 2 days because of the pain, so we kept him busy with head phones and books. This movie helped my son AFTER his surgery while he was waiting the 6 weeks with no eye. Also I got him the book My fake eye the story of my prosthesis and read it to his class, that also helped. http://origin.www.atomfilms.com/film/ocularist.jsp?channelKeyword=channel_documentaries Email me at nancyshingler1@yahoo.com
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Fiona Keller
3 posts
Mar 22, 2008
4:01 PM
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Dear Nancy Thanks for your reply - yes I'd love to speak with you! I've sent you one email and will send you another today! Hope you get it! Warm regards Fiona
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Luke'smom
4 posts
Nov 18, 2008
2:54 PM
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Fiona, Please see my new posting (good result after eye removal and feel free to e-mail me at Phedrick@carolina.rr.com). I can make you feel better and give you our very positive experience!
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Chaytons Mom
2 posts
Nov 30, 2008
12:57 PM
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Thanks for the ideas, nancii. My son Chayton (age 2 1/2) is having his left eye removed on the 9th and I am not sure what to expect for the first few days (or weeks) after surgery.
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