ronniede
1 post
Dec 24, 2009
2:40 AM
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my grand baby was diagnosed yesterday a Childrens Hospital in New Orleans with Coats. They are recomming she goes to St Jude next week for a second opinion and possible laser surgery.
she has never seen out of that eye and never will. i have been taking pictures of her since was born and very concerned about the white eye reflection. my wife saw a special on TV and prompted the urgency of having her tested.
Last Edited on 4-Jan-2010 1:10 PM
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Jacobs Parents
240 posts
Dec 26, 2009
6:47 AM
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ronniede,
If Children's Hospital did not rule out Retinoblastoma, you should go to St. Judes. You need to confirm it is not Retinoblastoma. I would also call the doctor that did the first testing, and ask him or her if she is sure it is Coats'. When you look at the pictures, does her eye appear yellow or does it look white? Please let us know how the testing at St. Judes goes.
Take care,
Dave
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ronniede
2 posts
Dec 27, 2009
8:31 AM
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We were blessed that one of the nations top specialist in eye cancer was in town on vacation. Dr Barret Haik was here from St Jude and volunteed to assist his friend Dr George Ellis in the tests on Lauren. He was 99.9% sure it was not Retinoblastoma. Lauren is leaving today for St Jude with her parents. I am sending pictures that I have taking since she was born. The coloring was more yellow and showed up in some of her first pictures.
Thanks for the website.
Ronnie
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Jacobs Parents
241 posts
Dec 27, 2009
6:27 PM
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Shucks, and I was getting ready to send your grandma Bady a Christmas card.....Good luck to you at St. Judes.
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ronniede
4 posts
Jan 04, 2010
1:17 PM
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After more tests at St Jude in Memphis they agreed there was no cancer in the eye. She does have two cysts in the eye one the size of a pea and the other the size of a bb along with the bleeding and calcium build up. They could not treat her there and suggested doctor in memphis that would use cryotherapy to try and save the eye, but my daughter and her husband both have new jobs and could not stay. They did provide the baby with glasses to protect her good eye, but it very hard to keep them on her. We are hoping to find someone closer that can treat her.
Last Edited on 4-Jan-2010 1:27 PM
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ronniede
5 posts
Jan 14, 2010
12:36 PM
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Lauren's mom and dad are going to take her back to memphis next week for a one day treatment using cryotherapy. No one is New Orleans is able to perform this type of treatment to try and save her eye. St Jude in memphis has been so helpful in setting this treatment up even though it is being done at Children's Hopsital. They said the next treatment would be in three months. Thanks again for the info on this website.
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JKC
1 post
Jan 20, 2010
3:24 AM
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I wanted to post a message to tell you my daughter went blind through coats disease at age 3. She is 16 years old now. She had surgery to correct a squint when she was 7 years old and is now awaiting further surgery to correct the "same" squint. She has also recently been given a cosmetic contact lense to cover her "white" pupil. Although she is a very beautiful, confident young woman (with an abundance of boyfriends!!), she has been wearing her hair over her eye in order to hide the discolouration of her pupil/iris, we are hopeful that the pending surgery and cosmetic lense will give her that extra bit of confidence to change her hairstyle, reveal a very pretty face and no longer feel the need to hide her eye from those who do not know her.
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ronniede
6 posts
Jan 22, 2010
12:12 PM
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Thanks for post JKC. Lauren just came back last night from cryotherapy treatment in Memphis. Her eye is swollen but it doesn't seem to affect her at all. She is a beautiful strong little girl. The doctors feel the treatment whent well and she will go back in three months to be evaluated. I wish I could post pictures for people to see. Thanks again and I hope everything works out well for you daughter.
Last Edited on 22-Jan-2010 12:13 PM
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