Shayes
1 post
Feb 16, 2010
11:43 AM
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Recently the school nurse sent home a note stating that my oldest son (8)failed the vision test at school and needed to have a follow up with an opthomologist. After taking him to get his eyes examined the Dr. told me he had 20/200 in his left eye and he would need glasses. After examining his eyes further the Dr. saw what was thought to be a scar and we would need to be seen by a specialist.
After meeting with the specialist and having my son's eyes dialated, they then gave my son the diagnosis of Coats Disease. We would need to meet with a surgeon. My son is a very active child who plays multiple sports and has a younger brother he horses around with. My stomache sank. I had never heard of this disease.
After looking at this site for info I learned of the "yellow eyes" in photos. Immediately I looked at one picture of my sons left eye and it was so apparent. Why hadn't I seen this before and questioned it? I looked back at photos over the past 1-2 years and it had been there looking at me clear as day. Again, why hadn't I noticed?
My son is shceduled to have laser, cryotherapy and Avastin injected into his eye this Fri. 2/19/10.
I am wondering if any of the Coats patients are recommended to wear glasses for vision or just protective wear when doing physical activity?
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Jacobs Parents
249 posts
Feb 16, 2010
7:30 PM
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Shayes,
I cannot tell you how important it is to refrain from blaming yourself for not noticing your son's Coats Disease earlier. We have all been in your shoes before. It is so easy to get down on yourself for not doing more, or knowing more. You are doing all the right things. The Avastin injections are great. Your son will have the Cryo or Laser surgery soon. You have 2 very important tasks ahead of you in the short term. Number One is to protect his non-Coats' eye. The second thing is to treat him as a normal, active young man. He can continue to participate in sports, and horse around with his brothers. Emphasize the fact that he needs to turn his head more, to see what is coming from his non-Coats' side. Make sure he understands that he must protect both eyes. At the same time, encourage him to continue reaching for the same goals, as most of them are still within reach. Make sure that his teachers and bus drivers are aware of the fact that his peripheral vision is not as wide as it could be. He may or may not have trouble going down stairs. For your own sanity, please understand that there is nothing you could have done to prevent your son's Coats Disease. Please let us know how your son is doing, and feel free to ask any questions you think of.
Take care,
Dave
Last Edited on 16-Feb-2010 7:36 PM
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Josh'sMom
20 posts
Feb 17, 2010
4:01 PM
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Shayes,
My son's story is the exact same. His school nurse notice that he could not see in his left eye at the age of 8 and we also went to a specialist and was diagnosis with stage 4 coats. He is now 9 and we have his 4th surgery on March 12th. I know it feels like your world is spin out of control, but take it from a Mom that is right there with you... it gets better. You will come more a peace with the situation. Mom son Josh is a very active young man that is even the goalie on his soccer team. Go to walmart's eye center and get a good pair of rec specs for him and all will be safe. I wish you the best on the 19th. Feel free to ask any question you may have. I know I had a lot of them!
Thinking of you and your family,
Cheryl
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Shayes
5 posts
Feb 18, 2010
8:38 PM
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Thank both of you for the encouraging words and support. We just picked up my sons rec glasses today and I will be more at ease when he is playing sports. My son will have surgery tomorrow and I am very nervous. I spent a good part of the week reading through some of the posts on this site. I found a lot of great info and some that was terrifying. Is it inneviatable that my son will loose his eye at some point? Or can some Coats patients live with the eye intact for the rest of their lives? I am so scared that we will have a long journey with this. Seems as if every child has numerous surgeries.?
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Josh'sMom
21 posts
Feb 19, 2010
11:07 AM
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Hi Shayes,
Hope surgery went well! Please don't get scared of lossing the eye. It is my understanding that it rare. And the surgeries you are doing now will keep from that happening. Yes we have had three surgeries in one year, but we are most confident that the four one in March will stop all of the leaking. For how long... no one knows but that why we will keep up with check up. There are many success stories out there. My son has even gain some sight back in his coats eye where he had zero vison before! Please keep your chin up. There will be light at the end of the tunnel. Hang in there. By the way where are you having treatments done?
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Shayes
6 posts
Feb 19, 2010
7:29 PM
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An update post surgery, the Dr. was pleasently surprised that things were better then we thought. My son was set to have cryotherapy, laser, and Avastin today. The Dr. thought that the retina had started to detach. During surgery he discovered that the retina has not detached and he was able to get to all of the blood vessels with the laser treatment. He did inject Avastin and a steroid. He will need close follow up.
I cannot tell you how relieved I am that the surgery is over. My son was a champ. He never asked any questions and did what they said. He has been a little nauseated from the anesthesia but has c/o no pain yet. We will see the Dr. again for follow up in one week. We are seeking treatment in Tacoma, WA. We live in Graham, WA approx. 25 miles fron the surgeons office.
We are going to remain positive and take one step at a time.
Thank you for your thoughts and prayers! We really appreciate it.
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