kymmie
13 posts
Nov 25, 2008
12:07 PM
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Hi everyone. Caragan saw the doctor this morning, she had surgery October 20/08 and had laser, cryo, and steriods done.(She is 10) At that time she had some sight left in her eye, post surgery, she has none.
The doctor has been talking about eye removal due to her head aches but we are putting that off until it has become a last resort.
He is going to start LUCENTIS injections before Christmas. The injections cost $1800 and are not covered by basic medical and may not be covered by our extended health.
Has anyone else tried this?
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ginta
14 posts
Nov 25, 2008
9:18 PM
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Have you asked about Avastin , as it has simmillar efect ,but is much cheaper compared to Lucentis. Please go on line and read Lucentis versus Avastin.
Best wishes.
Last Edited on 25-Nov-2008 9:21 PM
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Tracey
15 posts
Nov 30, 2008
7:27 PM
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My son Nicholas had his 2nd Lucentis injection on Nov 28th. Everything went really well. The Dr did a follow-up 3 wks after his 1st injection but nothing improved or decreased and Dr expects it will take 3 injections to notice any improvement if any. He will have an angiogram sometime after his 3rd injection. All we can do is have faith, pray and hope for a miracle. All the best Kymmie. I will pray for your daughter Caragan. I also have a 10 year old daughter and she has no problems with her vision.
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kymmie
14 posts
Dec 07, 2008
11:24 AM
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Ginta,
I did ask about Avastin but the doctor said he did not want to use the "cheaper stuff" on her because of her age. I will read up on both of them. Thank you.
Tracey,
Oh thank you so much.
I will pray for your son Nicholas. I have 3 other birth children with perfect vision.
Last Edited on 26-May-2009 1:06 PM
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Tracey
16 posts
Jan 07, 2009
6:31 PM
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This is to let you know that Nicholas will have his 3rd Lucentis injection this Fri Jan 9th at 1:30pm. Please keep Nicholas in your prayers that these injections will clear up his leaky vessels for definite improved vision. Thanks.
Kymmie - Has Caragan received any injections yet?
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jennyr
15 posts
Jan 08, 2009
9:59 AM
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Hello everyone, it has been quite some time since I've posted. Can you tell me why a Dr. might suggest lucentis injections? Tracey, you are from Ontario and seen in TO, aren't you? My Jake is also seen at Sick Kids.
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Tracey
17 posts
Jan 11, 2009
1:49 PM
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Hi Jenny. I hope your son Jake is doing well. Yes, we are just west of Toronto. Nicholas had his third injection on Friday and everything went very well. Dr said there wasn't any improvement but hopefully now with this 3rd injection it will start to improve, and he will have an angiogram/OCT in 3-4 wks to determine improvement. If so, he will have more injections. If not, then Dr will determine next course of action. Dr feels that if he were to do laser on Nicholas that it would not seal up all the leaks and also injections do not leave scar tissue. Take care, Tracey
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kymmie
15 posts
Jan 19, 2009
10:40 AM
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Hi Tracey. Caragan had her first injection just before Christmas and will have another one next week. She tells me she can see some light now whereas before she saw only blackness. How is Nicholas?
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Tracey
18 posts
Jan 21, 2009
6:29 PM
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Hi Kymmie: I'm so happy to hear that Caragan has shown some signs of improvement. That's wonderful news! Nicholas is doing well but still says that it feels like he's looking through a bubble. I'll let you know the outcome of his pictures in early February. Many prayers to all the children and families. Have a great evening and talk soon, Tracey.
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Tracey
19 posts
Feb 11, 2009
6:46 PM
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Well we have some great news to share.....Nicholas had his OCT/angiogram and his eye has improved but we don't know all the details as our Dr wasn't there during the photography. However he has the results and his office today has indicated he wants to do another Lucentis injection so we'll get the details when we go in the next couple of weeks.
Kymmie - How is Caragan doing??
Esperanza....thank you for all your inspiration and encouragement. We always say prayers at bedtime with Nicholas present and continue to pray for each and every child that have Coat's and other diseases.
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stefanos
1 post
Feb 12, 2009
3:43 AM
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anyone from Greece?
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Tracey
20 posts
Apr 19, 2009
6:39 PM
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Just to continue from my last posting above on Feb 11th, Nicholas has had SIGNIFICANT improvement in his Coat's Eye according to that last angiogram/OCT. However, he has had 2 more injections since - he just had one on Friday - a total of 5. We hope this is the last one but he will have another angiogram/OCT in 3-4 weeks to see if he will need another injection, or perhaps patching may begin to make him use his Coats eye to strengthen his vision and to reconnect the signals to his brain. Our prayers have been answered!! Thanks to everyone on this website. Tracey.
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Jacobs Parents
197 posts
Apr 20, 2009
4:06 PM
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Tracey,
That is amazing news!!! We are so happy for you and your famiy. Hopefully, more doctors will feel comfortable about recommending Lucentis injections. We will continue to pray for you and Nicholas.
Take care,
Dave
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mommy74
10 posts
Apr 23, 2009
9:42 AM
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The news about Lucentis is fantastic. My son has an eye exam this Saturday. Fingers crossed. He had a third round of cry in January and his eye was swollen shut for almost 3 days. There's still some redness left - I can't even begin to imagine that he might need another round so soon!
I only wanted to ask: the injection? is it administered into the eye? Just trying to get an idea. Thanks.
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Dunc & Frank
2 posts
Apr 27, 2009
3:12 AM
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Can anyone tell me what the purpose of Lucentis / Avastin injections is. What do these injections actually do?
Many thanks,
Duncan Sewell
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Jacobs Parents
200 posts
Apr 29, 2009
4:09 AM
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Duncan,
It is believed that either drug will help to stop the blood vessels behind the eye from leaking. This leakage puts a lot of pressure on the retina, causing it to detach. Avastin ia actually a cancer drug designed to stop the development of new blood vessels. In cancer, this process is supposed to starve the tumor, by cutting off the supply of blood. Lucentis is designed to treat Wet AMD (Age-Related Macular Degeneration). Both have been somewhat effective at controlling the leakage caused by Coats' Disease. These drugs are much less destructive than laser surgery or Cryotherapy, the primary treatment options for Coats' Disease for years, but both cause severe scar tissue. Both Lucentis and Avastin are typically used when there is a chance that some level of vision can be saved, which was not possible in our case.
Thanks,
Dave
Last Edited on 29-Apr-2009 4:09 AM
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kymmie
19 posts
May 26, 2009
1:06 PM
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Hi Tracey, I am so happy about Nicholas, how is he now, how many injections has he had in total? How far apart were they? Can he see?
Caragan is not doing well, eye is shrinking, leaking constantly and dying. She's had 3 lucentis injections, we are going to leave the eye alone for a while and try to figure out what else to do. I have pictures of her before and after surgery and injections if I could post them I would.
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Tracey
21 posts
May 30, 2009
12:24 PM
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Hi Kymmie: Hope you and Caragan are doing well despite the difficulies right now; it must be so hard but have faith in that everything will work out. Our prayers are with you and your family.
We are waiting on the results still of Nicholas' angiogram/OCT as Dr away. They were able to get some good pictures but Nicholas didn't do that well with the dye this time so they weren't able to take the pictures as the dye was coming through the vessels. We should have results back late next week. Nicholas has had 5 injections ranging anywhere from about 5-8 wks apart. He still can't see that well out of his Coats eye but with both eyes he can see pretty good. It will take at least 6 months if his eye has stopped leaking for all the exudates to absorb. It's a slow process but compared to his original pictures when he was diagnosed, there is a significant improvement. You'd never know Nicholas has an eye impairment and we are very fortunate that he told us and we caught it fairly early. It's still hard but you're right, we have to put things in perspective as it can be alot worse.
If you want to e-mail me, Dave can give you my e-mail address. Take care.
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Jacobs Parents
210 posts
May 30, 2009
4:06 PM
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kymmie,
If you want to send me a feedback message with your email address, I can send it to Tracey.
Thanks,
Dave
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JMom
1 post
Jun 03, 2009
7:13 AM
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My son is 7 and 1/2 he was first diagnnosed with Coats' disease when he was 5. It was found on a routine eye exam before there was any vision loss. At the time we felt very fortunate. Since that time he has a three laser procedures, the most recent one was April 14, 2009 and by May 1, I started to notice vision loss. We have seen several doctors and most recently are going to Wills in Philadelphia. He is scheduled for another procedure next week, however after reading these posts I am wondering why no-one has suggested Lucentis to us. Can you tell me where it is that you all are receiving these injections?
Thanks so much.
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JMom
2 posts
Jun 03, 2009
7:13 AM
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My son is 7 and 1/2 he was first diagnnosed with Coats' disease when he was 5. It was found on a routine eye exam before there was any vision loss. At the time we felt very fortunate. Since that time he has a three laser procedures, the most recent one was April 14, 2009 and by May 1, I started to notice vision loss. We have seen several doctors and most recently are going to Wills in Philadelphia. He is scheduled for another procedure next week, however after reading these posts I am wondering why no-one has suggested Lucentis to us. Can you tell me where it is that you all are receiving these injections?
Thanks so much.
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jjmullins
16 posts
Jun 03, 2009
7:32 AM
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u are closer to the cleveland clinic area go there
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JMom
3 posts
Jun 03, 2009
8:34 AM
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We are not closer to Cleveland we actually live in NY, but at this point distance isn't my concern it is just getting my son the right treatment and to prevent further vision loss.
Thanks for your input.
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geoffjess
12 posts
Jun 04, 2009
11:39 AM
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JMom - are you seeing Dr. Shields? They are wonderful and we have been seeing them since diagnosis of January this year. Our 5yo son has had two Cryotherapy and avastin injections. The results have been very positive. We go back in July to see if further treatment is needed at this time. The staff at Wills has been great. Good luck with next week.
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JMom
5 posts
Jun 05, 2009
11:18 AM
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Yes we saw Dr. Shields for the first time last week.
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