jennyr
5 posts
Sep 08, 2008
12:53 PM
|
I will be thinking of you and your family tomorrow and I hope that everything goes well for your son.
I am also trying to get an earlier appt. for my Jake, even if it has to be at TO Western. I am really worried that if things are getting worse and I don't want to wait any longer than I absolutely have to.
Any idea of how long you'll be there? Did they give you any information of what to expect?
Jenny
|
Jacobs Parents
127 posts
Sep 08, 2008
3:38 PM
|
Tracey,
We will be thinking about you and Nicholas tomorrow. We wish you the best of luck!Take care,
Dave
|
Tracey
7 posts
Sep 08, 2008
6:36 PM
|
Thank you to everyone for all your best wishes from the bottom of my heart. We pray every day for our son and for all the children and their parents that are going through different degrees of challenges here on this website. Nicholas will be awake for the 10-15 minute procedure in the Dr's office with drops in his eye for pain relief. They informed that he might feel a pulling on his eye but just has to follow Dr's instructions and Dr will hold his eye open. Nicholas is scared and has cried already so he can be strong tomorrow. He said he doesn't want me in the room because he said he might look at me. I'll let you know how everything went. Tracey.
|
Tracey
8 posts
Sep 10, 2008
6:09 PM
|
An Update: Nicholas did not cooperate so not able to do the laser treatment. However, Dr looked at his pictures again and decided another plan of treatment. He wants to do a Lucentis injection under anaesthetic at Sick Kids Hosp; a month later do another injection with laser and the month after to do another injection/laser. The Toronto Western Hosp eye clinic is for adults however they will do laser when awake for children. Any other procedure from what I understand is done at Sick Kids. Has anyone had experience with Lucentis for children?
Please advise! Tracey.
|
Jacobs Parents
128 posts
Sep 11, 2008
9:55 AM
|
Tracey,
Can you ask him if he has tried Lucentis on any other young Coats' patient, and what the results were? Several years ago, I talked to a scientist at Genentech about using Lucentis on children with Coats' disease. He indicated that he was very apprehensive about using it on children. He said that he had some evidence that the drug reacted differently on children than on adults, and he was concerned about the risks. When I get home tonight, I will try to find his email. Genentech may have gotten additional data since then, that proves the risk was overstated. Thanks,
Dave
|
help4coats
18 posts
Sep 23, 2008
11:47 PM
|
Hi Tracey, My Dr. will not use any procedures that are experimental like Avastin. I have brought it up a few times, especially after my son's last eye exam. My son has some scarring and it bothered me a bit that we fixed the leakage but now there is permanent damage caused by scarring. My Dr. said very few Drs. are willing to try experimental and newer procedures on children. I think the big thing with them is liability concerns. I think about trying to find a Dr. willing to try these drugs on children then I get nervous and think what if there is some reaction many years down the road that we do not know about. I have mixed emotions about some of the alternative treatments that are out there.
Barb
|
cruzandfamily
25 posts
Sep 24, 2008
7:51 AM
|
Do doctors still consider Avastin experimental?
|
Jacobs Parents
134 posts
Sep 24, 2008
9:52 AM
|
Christy,
Avastin is fully FDA approved for the treatment of cancer. If it is used for any purpose other than for the treatment of cancer, it is considered an "off label" use. It has not gone through the rigorous clinical trials for the treatment Coats' Disease or any other eye treatment, so it is not approved for those uses. In that sense, you could call it experimental. Your next question will be, why isn't in clinical trials for Coats' disease, if we think it works? I believe that this is a financial decision. You see, Avastin was developed by the drug company Genentech, which is the same company that markets Lucentis for the treatment of Wet AMD. Genentech has made it clear that Lucentis is their front line drug for the treatment of eye disorders, and it would be redundant (and very expensive) to put Avastin through the same clinical trials for the same uses. Of course, if approved, Avastin would cut into the sales of Lucentis. So, we await the results of the Lucentis clinical trial for Coats' disease, which are years away. Here is a link to a great Avastin article that every Coats' parents should read: http://www.medrounds.org/amd/2005/10/avastin.html
Hope that helps!
Dave
|
Tracey
14 posts
Oct 15, 2008
7:29 PM
|
An update on Nicholas post Lucentis injection on Oct 3rd: Nicholas is doing remarkably well and he says that he can see "a little" better. The Dr says that he probably won't notice any change after the 1st injection and will need at least two more injections 4-6 wks apart. He also lasered a leaky vessel in his peripheral vision but states that he won't be able to laser the leaky vessels in his central vision as it is too close to the macula. So we really have to rely on these injections to make those vessels go away for good. Nicholas goes in for a check-up in two more weeks to see how the vessels have co-operated and shortly after that he will have his second injection. I'll keep in touch. All the best to everyone and again thanks to Dave for this incredible website. Tracey.
|
