snoles
4 posts
Jul 08, 2009
4:46 PM
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Has anyone used this drug for COATS'? If so, what have been the results and or side effects? They want us to do this on our six year old and we are really scared.
Sherry
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Josh'sMom
17 posts
Jul 17, 2009
5:03 PM
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My son Josh (age 9 in stage 4) has had two surgerys that the Doctors used Avastin injection along with cyro. And it has helped in a huge way. We were able to stop the leaking with only two surgerys and just had the 3rd today to treat the abnormal vesels. I did not notice any side affect from the injection just redness and small amount of pain from the surgery. I wish you all the best! Cheryl
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geoffjess
13 posts
Jul 20, 2009
7:30 PM
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We too had 2 surgeries with Cryotherapy and avastin. Our son is 5 and doing very well. They have stopped the leakage. The doctors (Shields in Philadelphia), were very pleased with how well his eye has responded to treatment.
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JMom
10 posts
Jul 26, 2009
11:27 AM
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I have to tell you I am surprised. My son is seen by doctor shields also and they told us that there are no longer using Avastin to treat Coat's disease. When did he have the Avastin treatments? Do you mind if I ask how your son's vision is or was prior to the avastin treatment? I only ask becasue my son's vision is still pretty good in his Coat's eye 20/60, and I got the impression that they may have tried it if his vision was worse.
Thanks
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geoffjess
14 posts
Jul 27, 2009
10:46 AM
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JMom- Our surgeries with Dr Jerry Shields were in January and April of this year. Our son's vision was 20/400 in his Coat's Eye (much worse than your son's), and his vision has remained the same since the treatments.
He also has Cysts on his retina, which is not typical of Coat's. They believe the avastin may have helped the cysts "deflate" some. We are now going back to the retinal specialist to see if there is anything that can be done about the cysts to improve his vision.
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2boysmom
7 posts
Aug 02, 2009
11:40 AM
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Hi - We just had our 9 year old undergo an Avastin injection along with some laser work in June in NYC. Other than a sandy gritty feeling on his eye post-op, there were no side effects - he was back to normal later in the night. We just went for a 3 month post op exam, and the dr. said there were some improvements noted w/ regard to the deposits. We will go again in 3 months to see if there have been anymore improvements.
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Tyson Jacobsen
1 post
Aug 04, 2009
9:53 AM
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I was treated with Avastin 3 months ago. My Dr. (Timothy You) did not notice any improvement. I'm headed back into surgery today for a vitretomy and more laser surgery.
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2boysmom
8 posts
Oct 25, 2009
8:19 PM
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Hi - me again, happy to report that my sons procedure in June looks like it was successful. There is no more evidence of leakage and the damage is starting to repair. there is still some in the center, but the dr told us that thats the last area to clear. Saying prayers and keeping fingers crossed - for all of you too! We go back again in 3 months.
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Jacobs Parents
233 posts
Oct 26, 2009
9:16 AM
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2boysmom,
That is really good news. We continue to hear a lot of success stories with Avastin. Has he retained a good percentage of his vision in his Coats' eye? Please keep us updated on his progress, the success stories are so inspirational to other parents!
Take care,
Dave
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2boysmom
10 posts
Oct 26, 2009
8:06 PM
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I failed to remember the numbers, but his vision did very slightly improve and not sure that that was due to the procedure or just a better testing day. I will post again with all the details in 3 months. I will say that Dr. Lopez of Columbia University in NYC is very understanding and one of the best in my book.
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Ryan'smom
15 posts
Nov 28, 2009
4:35 PM
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Our 3 year old has been treated with Avastin three times since May 2009. Last week, at his 4th EUA, the doctor did not do another avastin injection, but did treat the remaining vessels with cryo. Ryan's vision is about 20/400 in his Coat's Eye, and does not seem to have decreased since the start of his 4 treatments. We'll have his 5th EUA in February 2010 but are optimistic that he will not need extensive cryo again. The doctor attributes much of the success to the avastin injections.
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GavinBrown
1 post
Dec 15, 2009
4:57 PM
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Hi, I was diagnosed with mild Coats/Leber's miliary aneurysm in right eye in Sep 2008. I was 38 at the time. I had an injection of Avastin in Dec 2008, with no effect. I had an injection of Triamcinolone and a course of Laser photocoagulation in Jan of 2009 . My vision returned to near 20/20 within about a week. In Sep 2009 I underwent cryotherapy to cauterise leaking vessels that they could not get with laser. At the same time they gave me another injection of Triamcinolone. Within about 2 or so weeks my vision was back to being close to 20/20. Visual acuity started to decline due to one of the side effects of Triamcinolone – being cataract. Of which I underwent surgery to remove and an implant placed in Nov 2009. My vision is now at 20/30 due to an epiretinal membrane (macular pucker) in the right eye. Next will be a vitrectomy to remove the scar tissue. I suspect this is also a side effect of Triamcinolone, surgery and the disease. It seems every time we fix one thing something else pops up in its place! It also why Ophthalmologists are trying alternatives to Triamcinolone – due to the nasty side effects.
In my case Avastin did not work, it was the old Triamcinolone injection that seems to have worked wonders. But it only lasts 6 months in a patient who hasn’t had a vitrectomy. In a patient who has undergone a vitrectomy, then Triamcinolone will only last about 1 month.
I would be interested in hearing from others who have had the same issue and to see what treatment they are receiving and what their visual outlook is.
I would also be interested to hear whether or not there is any research being done on Coats disease anywhere in the world?
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mommy74
12 posts
Mar 06, 2010
8:56 AM
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Hi Gavin,
I'd really like to know how you've progressed. My son (8 yrs old - diagnosed with Coats at 5.5 yrs and undergone 3 rounds of cryo and laser - stable for the past 15 months) was diagnosed as having an epiretinal membrane today. The doctor has advised surgical removal and the thought of his eye being cut open terrifies me. I had a few questions, and I would be eternally grateful if you could take a few minutes to answer them. (1) Does a vitrectomy improve eyesight for a long time or is that just temporary? (I should have probably asked the doctor but I was so shocked, it didn't occur to me.) (2) What are the post-op complications, if any - I'd like to be prepared. (3) Does it disfigure the eye? My son is moving to a new school this June and I'm a little worried about whether he might get picked on if he looks a bit different. Stupid reson to worry, I know, but I'm still not myself right now. Thanks for listening and I hope I hear from you soon.
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GavinBrown
2 posts
Mar 06, 2010
1:10 PM
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Hi,
I have a meeting with the optho on March 15 to see how things are progressing. I have to say that I dont think things are any better, rather they have probably gotten slightly worse.
I havent had the vitrectomy yet, however, I suspect its the next op on the cards. Therefore I dont have exact answers to your questions yet (maybe on the 15th I might - certainly will be asking).
Cutting the eye is not a big issue given that the cataract surgery requires micro based cuts, it heals pretty well. No washing it for a week, no swimming for 2 to 4 weeks and drops in 4 times a day. I suspect the biggest post op issue would be infection - hence the 4 drops a day of antibiotics.
When we did dicuss the op last year, my optho did say that the procedure was pretty run of the mill and he didnt see too many issues except for the reduced effect of triamcinolone. He did mention one complication could be if they have to insert a gas bubble due to retina tear, then you could be face down for a week or so until it all heals. But who knows.
My optho did say there is no silver bullet or pill to take with this disease, it is a matter of working through each issue and dealing with it at that time. He did say that if I hadnt acted when I did then I would have lost the eye!
It is pretty hard to take in what they are saying at the time when you are told. You are somewhat stunned! Especially when they give you the bill and its not covered by Medicare or your health fund in Australia!!!! My suggestion is to get your list of questions together and either ring your optho or go in and see them. Get the answers you are looking for and dont take no for an answer.
I would also be interested in the answers, and good luck.
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mariana argentina
1 post
Mar 12, 2010
6:01 PM
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Hi, my son is 20 years old and diagnosed coats when he was 14. He has had several laser yet he is loosing central vision. We live in Argentina and the treatment has been perfect yet I wanted to know if there was something more to be done. Last week we took him to Bascom Palmer in Miami. They gave an injection of Avastin. In 3 weeks he has to be checked with CTO etc to see the effects this drug has done. I will let you known asap.Thanks to all the people who write posts, it has been very helpful!!
Last Edited on 12-Mar-2010 6:02 PM
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