Joshua's mom
3 posts
May 16, 2009
6:54 AM
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Does anyone know about other treatment options besides the Cryo? Joshua's doctor mentioned that too much cryo may destroy some tissue around his eye. Seeing that he has already had two, and hasn't responded as hoped, I am a little concerned. He did mention an experimental medication that is used for similar eye diseases. He says we're not at that point yet, but I like to know what our options are for the future. Does anybody know anything about this?
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Ryan'smom
6 posts
May 18, 2009
2:28 PM
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My son, Ryan (just turned 3) had an avastin injection at his first appt on May 11th in addition to cryo on about 25% of the leaking vessels. We go for a follow-up visit on MAy 27th, but I don't know whether they will be able to determine the effectiveness fo the avastin or how many are typically required to see results. His condition at diagnosis is mid-staged with slight retinal detachment. He is being treated in Atlanta at Emory.
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Joshua's mom
4 posts
May 21, 2009
7:55 PM
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Thank you,
My son goes back to the doctor tomorrow (May 22). I will mention this option to him. He did mention a possible injection treatment. Joshua's retina is detached. He is being treat at the Cole Eye Institute at the Cleveland Clinic. Please let me know how Ryan's follow up appt. went. Thank you again.
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2boysmom
1 post
May 21, 2009
8:08 PM
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Hi! My son (age 9) was recently diagnosed w/ Coats. Our NY Dr. suggested injecting avastin and we are going to do it. If anyone else has any experience with this, I'd appreciate it. I'm scared.
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Joshua's mom
5 posts
May 21, 2009
8:19 PM
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2boysmom,
I know how scared you are. My son is 2 and he has had 2 cryos done already. I have been reading a little about the avastin and it is all very confusing to me. Please let me know how your son does.
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2boysmom
2 posts
May 24, 2009
7:24 PM
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Thanks Joshua's mom, I will let you know. His birthday is next week, so I'm going to schedule it the following week.
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JMom
4 posts
Jun 03, 2009
8:46 AM
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Are you being treated at Slaon Kettering.....Have you started the Avastin????
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Ryan'smom
8 posts
Jun 03, 2009
11:55 AM
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I agree that Avastin injections are a bit scary, but our surgeon and pediatrician feel confident that the small dose that it being injected is localized to the eye and very little, if any, will travel to the blood stream. More and more doctors are doing it, so I feel better knowing this. At Ryan's follow up appt, under dilation, believe that there is some reduction in the exudiation and he seemed to be pleased with the progress. His next chry/avastin injection is June 29th and I'm hoping we'll have a better idea of how his first treatment went then. Please keep us posted on how Joshua is doing. My son recovered surprisingly quickly from the first treatment -- he was back in school within 48 hours.
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2boysmom
6 posts
Jun 17, 2009
4:58 PM
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Hi All,
We went to Columbia University's Childrens Hospital yesterday where my 9 year old son received his first treatment. He was injected with the Avastin and rec'd a little laser surgery. The Dr. said that all went well and we will follow up in a month to see if any of it worked - fingers crossed!! He recovered quite quickly, once he awoke, he was unable to open his eye, complained of pain in the eye-brow, it was tearing like crazy, but after a little food in his system and a half hour car ride home, he was back to himself wanting to play his wii. He went to school the following day - the only thing noticable is that the eye is a little bloodshot and swollen - but only to those who knew and were looking. Will let you know how me make out in a month. This web site is great, thank you!
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