Rod
14 posts
Jun 21, 2011
7:56 AM
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Is anyone aware of ozurdex being used on children for coats? It has just been approved for this use in Canada and it's been advised that we try it. Does anyone else from around the world have any experience with it and use in kids?
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Rod
15 posts
Jul 22, 2011
6:59 PM
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My son had an Ozurdex injection today. It is a quick 10 minute procedure and he is not complaining of any pain as of 6 hours after the sugery. There is a red dot where the implant was injected. Our doctor has high hopes that this will be the answer for Coat's. Time will tell. I'll post later with an update.
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Tracey
44 posts
Aug 11, 2011
7:28 PM
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Ozurdex for Nicholas tomorrow....I am actually looking forward to it in the hopes that it will greatly reduce the swelling and exudate and that hopefully he will see 3 lines better on the eye chart! I will post later with an update as well. Please say a prayer for us. Thank you.
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Tracey
45 posts
Sep 04, 2011
8:08 PM
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Nicholas had his ozurdex injection and a post check-up almost 3 wks later (a few days ago). His eye pressure is within normal range. He had an OCT which shows no swelling; only a few markings which the Dr believes could be some lingering lipids. The Dr is amazed that in such a short period of time that there is no swelling as he wasn't sure the results for children. His vision is the same - about 20/100 but hopefully will improve over the next few months. We have another appointment in early Nov. and I'll inquire if any patching would be involved to strengthen his eye sight if there is still minimal improvement. Peak performance for this drug is at 3 months and will monitor after that. Dr Lam was involved in the ozurdex trial studies in Vancouver.
Last Edited by on Sep 04, 2011 8:09 PM
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Rod
17 posts
Nov 15, 2011
7:05 PM
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Just had a check up today. Preston's vision had improved to 20/300 on Sept. 20th, 2 mos after initial injection at which point he was only light/motion sensitive and has now slipped to 20/600 as the Ozurdex is wearing off. Doc has decided to do another round of Ozurdex as soon as OR time is available. This drug did wonders and I think/hope when the Doc figures out the needed frequency of use, we may start gaining some serious momentum towards beating this disease.
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Suse
14 posts
Nov 22, 2011
3:53 AM
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It sounds like you are both Canadian as well. We are about an hour north east of Toronto. My son, Jack, is treated at the Hospital for Sick Children's eye clinic. He was diagnosed with Coats at the age of 21 months and his retina is fully detached in his Coats eye. Recently he has had neovascular glaucoma develop in his Coats eye and we are trying to get his pressure stabilized. Can you tell me a bit more about this drug, Ozurdex?
Jack is now 11 years old and has had no vision in his Coats eye since he was a toddler. Our main goal is to save his Coats eye as you never know what research/developments may happen in the future. How old are your boys, Rod and Tracy? I hope the Ozurdex is effective in helping to manage Coats for both your children.
Thank you in advance for any information you can share with me about this treatment.
Susan
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Rod
19 posts
Nov 22, 2011
4:50 PM
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Hi Susan. My son was diagnosed just after his third birthday and he is now four. Ozurdex is a slow release implant that is mainly used on seniors. As far as I know, Nicholas and Preston are the only children it's been used on in Canada at this point. We had very encouraging results and I am pleased to have Dr.Lam as our doctor. I'm not sure if any of the other doctors there are going to start with Ozurdex or not. Ozurdex is very expensive at about $1200 a pop. I'm thankful my drug plan through work covers it. If you go to youtube, and search Ozurdex injection, you can see a video of the procedure on some guy.
Last Edited by on Nov 22, 2011 4:51 PM
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Rod
20 posts
Jan 22, 2012
5:10 PM
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We had another ozurdex injection in mid december and just had a checkup last week. Exudate is almost completely dried up and there is no swelling. Vision doesn't seem to be improved to much better than 20/300 or 20/400, but still much better than motion/light sensitive when first diagnosed. These are incredible results and for now there is no leaking. I couldn't be happier that we are finally ahead of this for now. I pray that it stays this way. We are back in 2 mos for another checkup. Push your doctors to try this drug parents. My son has not complained of any side effects and this has worked better than Avastin by a long shot. Good luck eveyone and keep up the battle.
Last Edited by on Jan 22, 2012 5:13 PM
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Rod
21 posts
Apr 04, 2012
8:35 AM
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We had a check up yesterday and my son's vision has slipped to 20/800 and there is swelling again. Ozurdex implant surgery booked in 2 weeks. On goes the battle.
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Tracey
48 posts
Jan 23, 2013
6:10 PM
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Just thought I'd bring this note string to the top of the page and inquire with Rod if anyone else has used ozurdex steroid injections for treatment for Coat's Disease. Please advise.
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