kymmie
4 posts
Nov 02, 2008
10:01 PM
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Hi there. My daughter just had surgery on Oct 20/08. She has had several surgies on her eye with the doctors not being sure what was going on but she has just been diagnosed with Coats...she is 10 and had her first surgery at 1. She has lost all vision in her eye and is apparently at high risk for eye removal. I have been told of an experimental procedure that involves injections into the eye and that is what we are facing next. We are just trying to save her eye at this point. Does anyone know at what stage and why they would remove the eye? VEGF is the procedure we will be starting with my daughter as she is at risk for losing her eye and at this point I figure, what have we got to lose. I also took my daughter to a naturepath and was told that sugar is very bad for the eyes and so I have taken her off of sugar, much to her dismay and have put her on vitamins and am amazed at how her post operative eye where it was yellow and awful looking from surgery looks ten times better the very next day. I am trying anything and everything I can think of at this point, I know the eye will be blind but I want her to keep it.
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karlperkins
13 posts
Nov 03, 2008
2:08 AM
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Why does she need the eye removed?Is it very painfull?Did you try some herbal remedies?Nettle tea for example.
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cruzandfamily
29 posts
Nov 03, 2008
9:10 AM
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Whoa...slow down and take a breath. :) Why do they want to remove the eye?
How many Coat's Patients has this doctor had?
Is your daughter in pain from the swelling?
Is all vision lost, or partial?
What did the doctor see during the surgery, and what did they do during the surgery?
Have they done an angiogram?
Have they tried cryotherapy, Avastin, or anything?
What is her IOP? If they just want to remove her eye, see another specialist. This should be a last resort. I will tell you my 13 year old has had three surgeries since August. They did more agressive cryotherapy this last surgery. My son said his vision was getting worse, but the doctor said he is actually getting it under control! So Bobby is on some Prednisone to break up the fluid. Stay strong, and ask questions. Best wishes, Christy
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kymmie
9 posts
Nov 03, 2008
12:16 PM
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Those are all great questions that I am going to take to my doctor. I am not sure why they are talking about removing the eye. The doctor said it will be a last resort and is thinking about starting VEGF injections.
She has no pain, no sight. I am trying herbal remidies as well cause it's all or nothing at this point.
I am confused that it has taken 10 years for diagnosis as she has been seeing eye specialists since a baby. She just had surgery on Oct 20 and is still home from school and seeing the doctor again next week. The doctor said he used laser, cryo and steriods.
Last Edited on 3-Nov-2008 12:19 PM
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karlperkins
14 posts
Nov 03, 2008
4:14 PM
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If there is no pain and it's definitelly Coat's disease there is no real reason for eye removal.Normally in this illness eye is to be removed only if there is too much ocular pain.I heard swedish bitters are good for treatment of some eye illnesses, try to clean her eye with it perhaps?It contains alcohol, so don't let her drink it of course.
Last Edited on 3-Nov-2008 4:15 PM
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kymmie
10 posts
Nov 04, 2008
9:58 AM
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She does complain of bad headaches...this is all very new to me. I will ask questions and move slowly. I have her on arnica, calcium and magnesium, and chrome from the naturalpath and have taken her off of sugar which is apparently terrible for the eyes.
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cruzandfamily
30 posts
Nov 04, 2008
10:49 AM
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Bobby's surgery was outpatient, and was back in school the next day. He didn't have any pain, just a little red. Did they want her out of school for a few days? Was she having complications? Christy
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kymmie
11 posts
Nov 05, 2008
10:41 AM
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Well, her eye was the size of a golf ball for the first week and the swelling and redness have now almost gone and she is planning on being back in school tomorrow. I took pictures of her eye before and after surgery because she wanted to see her eye... poor thing. What did Bobby have done? Maybe it was different than what they did to Caragan?
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cruzandfamily
31 posts
Nov 06, 2008
6:39 AM
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Bobby had laser surgery with Avastin injections, and agressive cryotherapy. He was put under for it.
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karlperkins
18 posts
Nov 09, 2008
3:32 PM
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Thanks Kymmie for lovely email!!!Had replied already, hope you received the response.
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kymmie
12 posts
Nov 24, 2008
6:34 PM
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Hi, I didn't get a response...sorry.
Caragan is seeing the doctor tomorrow as they want to do VEGF injections. They are $1800 per injection and not covered by medical. I don't know what we are going to do as she will need several. I hope all is well with you and yours.
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Luke'smom
8 posts
Dec 01, 2008
4:53 AM
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If my doctor did not diagnose coats disease for 10 years, I would absolutely get another doctor. Of course, you do not know when the disease developed, but this would concern me. I would want to go to a major eye clinic.
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presca
7 posts
Dec 02, 2008
12:53 AM
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Hi! My three years old son innocently close my eye with his small palm and ask me if I can see him. I don't know how he feels but I think till now he doesnot know that he cannot see with one of his eye. Do anyone have experience how they brought this bitter fact to their children that they cannot see with one of their eye. Presca
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