kemmel
2 posts
Jul 03, 2008
7:23 PM
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My son and our family just road on the biggest emotional and physical roller coaster in the last three weeks. Long story short, we discovered he couldn't see out of his left eye very well while playing ball with him one night which lead to an eye doctor appointment to tell us he had a cataract, which then lead to a specialist who told us he had a tumor, which then lead to another specialty hospital who told us it was retinablastoma (cancer), and then finally found the right answer which was that he had coat's disease. They removed his left eye last week Thursday and I believe as his mother I am having a harder time with this than him, even though I know it's been tough for him, obviously. Does anyone out there have any similar stories that can relate to him and give me any guidance? He is schedled to have a prosthetic put in on August 18. He is four and I am scared to death on how this is going to affect his life!!
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Angie1
1 post
Jul 05, 2008
7:25 AM
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We have just been told our son has Coats he is 6 at the end of the month. We had no idea until I took him for the routine eye test 2 weeks ago and it became clear he couldn't see much out of his right eye. He had an appointment with a consultant on Thursday who confirmed it and told us he had little vision left in his bad eye as he calls it. They think he has been suffering from Coats for the last few years and possibly since birth.
We are now waiting for photos to be taken in the next few weeks and a referral however the consultant needs to do some research first into who is dealing with Coats at the moment.
When I said to him after the first eye test I was surprised he couldn't see the letters he was shown he told me that it was because it was his bad eye and he can't see out of it. He can't remember it being any other way. That knocked me sideways and made us feel so guilty because surely we would have noticed if he couldn't see properly but Jack is a great reader, he's in the top set at school for literacy, he's learnt to ride his bike without stablizers in the last few weeks, he's not a clumsy child so there was no reason for us to think he couldn't see in one eye. I'm so proud of what he has achieved and his strength of character is amazing as he just getting on with life. Angie
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av8_r22
3 posts
Jul 09, 2008
3:36 AM
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I still have my right eye, but have a blind spot in the center. There are things I've really wanted to do but can't. (join the military or become a police officer). Your son can still grow up to be ALMOST anything he wants. And as bad as the situation is, it could be worse. He's at a young enough age that he will be well adapted to his vision by the time he's an adult. People who lose vision in their adulthood have a much harder time acclimating than I have had (diagnosed at 5yo) or your son will. There are many AIRLINE pilots out there, right now, flying with monocular vision. True story. Haven't been able to find any recent statistics, but in 1992 the FAA claimed to have granted licenses to 3,580 pilot with monocular vision. Of those, 957 of those pilots had licenses to fly commercially (anything from small charter planes to airliners). I couldn't be a soldier or a police officer, so I've been saving my money. I'll be starting helicopter flight school (civilian of course) within a year. Things WILL be ok. Check This Out
Last Edited on 9-Jul-2008 4:47 AM
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Julia
35 posts
Jul 10, 2008
5:04 AM
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Hi; Ever since our son was diagnosed, I have had a tough time with it! It is unfair for our kids to have to go through this! Every time we go in for a cryo therapy/EUA it is hard! But - I have heard so many stories of people with vision in only one eye or with prosthetic eyes and you would never know! They have had perfectly normal lives not limited from doing the things they want to do! Hang in there - time helps and as your child grows and experiences life as other kids do, you will have moments where you forget all about it. Finding this message board and other families who have a similar situation to talk with helps a lot! We have met many nice people in Philadelphia at the Wills Surgery Center with similar situations and also many families who have kids with retinoblastoma waiting for an eye removal. Kids are much more resilient that adults sometimes and will show you how strong you can be for them! TAke care and keep in touch through this board! Julia
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PhilG
4 posts
Jul 17, 2008
3:06 PM
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I was 4 or 5 when I was diagnosed with coats disease in my right eye at which time it was removed. I am presently 42 years old a career firefighter/paramedic. I have not found anything that I could not do or was allowed to do. Although as someone said I have never tried to be a police officer but in the state of NH I believe I still could be as long as I pass everything but have never wanted to be one. Philip.Greene@lebcity.com
Phil
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Angiepoz
16 posts
Jul 23, 2008
5:37 AM
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Kemmel,
My son was diagnosed with Coast at 2. Reading your post reminded me of our story. After 2 years of treatment there was nothing they could do for John and he had his eye removed. Like you I felt and still fell so terriable for John. Its been over 2 years now since his eye removal and JOhn is your typical 6yr old. He swims, plays football, t-ball and Tae Kown Do. I think he is amazing and invincable. So as much as we worry and I think thats cause we are parents and we are supposed to, our children can do it all we just have to let them. Good luck and my email is Angelaatc@comcast.net if you would like to talk.
Angie poz
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Luke'smom
3 posts
Nov 18, 2008
2:51 PM
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Kemmel, please see my post (new one entitled " good result after eye removal"). I can talk to you and advise you til the cows come home. There are so many things that a mom learns after the fact. We are so blessed and are son has such a great life! My e-mail is phedrick@carolina.rr.com.
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