I agree that this site is wonderful. I too recently found out that my 13 year old has coats. If it hadn't been for this site I probably would be in a MAJOR depression. Jacob's Parents have helped me out a lot emotionally. Just read all the posts you can.

I am in Northern MI.What part of Ontario?

It just helped me to post messages. It made me feel like I was talking to someone who understand.

Stay positive-

Christy

I know a lot of people here know more about the Avastin, but I just got another letter from the doctor in FL that talks about it. But I guess I thought laser surgery and the Avastin went together. I just hope this doc in Grand Rapids explains more to me. Anyway-the doc in FL said he underwent laser ablative management (still don't know what this is)with intravitreal, off label Avastin. The doc said he is thrilled with the early response to primary treatment.

Bobby says when he has both eyes open he don't really notice anything.

Keep me posted, I will learn much from you too!

Thanks-

Christy

Please bring up the option of using Avastin with your doctor and discuss pros and cons. They didn't mention it to us at Sick Kids either. They were very adamant that Laser and Cryo were the way to go and maybe they were right. I do know that the scarring from laser treatment and cryo resulted in a huge loss in vision for my son - he did have to have a lot of treatments. Sounds like your son may be lucky and you caught it early enough. Good luck to you both.
Anne-Marie

Thanks for responding; I have read your posts. We too are seeing Dr Lam and we now have a laser surgery date on Sept 9th at Toronto Western Hosp. I mentioned Avastin to his secretary but she states it will be laser. So I will phone her back and inquire more. Nicholas will be awake for the laser and the Dr will be holding his eye open; sounds scary but at the consultation the Dr stated that this would be more effective than putting him out for it but he would have to see the results of the OCT. Now he has the results, so he has decided that Nicholas will be awake. Obviously I guess any laser whether awake or out will still create scarring (?) I'm just wondering though since he is so young, do the eyes rejuvenate themselves over the years if it's an early stage?? All these questions, I didn't have a chance really to ask too many as the Dr wasn't there at the time of the OCT and as I go along, I am learning more and have more questions.
I think you live in Mississauga; do you still go down to Sick Kids periodically now? How long has it been?

Take care, Tracey.

We still see Dr. Lam once a year as Owen is stable for now. We also see a pediatric and special needs optometrist 6 mos after Dr. Lam's visit. I feel more comfortable with someone looking at Owen's eye twice a year (even if the Dr. feels it's not neccesary).

The best advice I can give you at this point is to write all your questions down on paper. Then prioritize them, most important first. Dr. Lam's clinics at Sick Kids are extremely packed and his time limited. A Resident will do a full eye exam and Dr. Lam will only attend for the last few minutes. He does not give you very much time so you have to be prepared with your list and belt out as many questions as you can. (Don't stop to breathe!). You want to ask Dr. Lam your questions, not the Residents as they come and go and it's always someone different.
I don't have any experience with Avastin, but it sounds like it's worth exploring. Not sure how the Toronto Western clinic is set up, but request to speak with/see Dr. Lam before the laser treatment is performed and ask specific questions regarding:
1. how much laser treatment is required? and more importantly where? Is the fovea (or central vision affected)?
2. Is he just treating affected blood vessels or is he also "spot welding' the retina back on because of a partial detachment due to fluid build up?
3. how much scarring from the laser does he expect, will it affect the central vision?
4. Does he think the exudates will break up and be absorbed? That's a loaded question cuz the answer is always wait and see.
5. Are there any other options that might be as effective i.e Avastin. What are the pros and cons?

Lastly, the part about having the laser treatment done while your son is awake. This is more for convenience and time/money saving. The laser treatment is the same whether awake or asleep. You should know you have the option to request either. Obviously there are risks associated with anaethesia so you need to look at the pros and cons of each and make an informed decision.

Good Luck to you both on the 9th. If I can be of further help, please post or send me an email address and I will reply.

Anne-Marie

Thanks for taking the time in sending me all that info of which will be very useful. I am very appreciative. We are going away for the next few days but when I return I can send you an e-mail. I actually tried to e-mail you before I became a "member" as one of your posts had an e-mail address but it came back undeliverable. Please provide your current e-mail address or does Dave provide it separately? Hi Dave!

Thanks again, Tracey.

Take care,
Dave

Last Edited on 25-Aug-2008 5:32 AM

Have a great weekend,
Dave

Last Edited on 23-Sep-2008 10:26 AM

I have a post out here back on page 7. It's dated in Nov. 06 and it's title is "My 5 year old son was just diagnosed with Coats disease". My son Nicholas was diagnosed in an early stage of Coats'. The retinal specialist that we see does not use stages either. When I asked him, he said between stage 2 & 3 if he had to classify a stage. My Nicholas had a tear in the retina with exudation, but it was not fully detached. He had 20/200 vision in his left eye before the surgery. He had laser surgery and cryotherapy during his first operation. It was done in the hospital and Nicholas was put under anestesia for it. The Dr. did not think Nicholas would sit still for the procedure in his office. After his first surgery, and at his first eye exam about 1 month later, his vision returned to 20/100 (20/200) before the surgery. His eye sight continued to improve 20/80 then to 20/60 by April 07. His first surgery had been Nov. 06. Then in May of 06 his eye exam showed that there was still leakage and that the yellow areas had grown a little. His eye sight had also slipped back to 20/100. Nicholas was scheduled for another surgery. In September 07, Nick had one more surgery since he still showed signs if leakage. He has not had a surgery since last year but is still seen every 6 to 8 weeks or so, at my request. His vision is 20/60 and there are no signs of leakage currently. He does have some scarring in the left eye from the surgeries. His vision will most likely not be repaired any further with the treatments they have today. The scarring is near the macular which directly affects central vision. I have to say that my Nicholas has absolutely no trouble seeing and has been a real trooper during this whole ordeal. He actually likes the photographer at the Drs. office and is starting to ask questions about his eye now that he is 7 and can understand a little more. He is an avid baseball player and has no trouble whacking the ball clear over every fielder's head. I too was filled with questions and worries. I sat at this computer sobbing uncontrollably while reading all these posts and looking at all the information provided on this web site and through it's links. I could not say this 2 years ago, but I am very pleased with the outcome of my son's treatments. I am very thankful for all the wonderful people who post out here and to Jacob's parents who provided all this wonderful information. My doctor will not consider Avastin. We have spoken about it. It's too experimental still and many Drs will excercise extra caution with Children. I thought about trying the clinic in Pennsylvania that is recommended on this web site just to see what they say. I live in Connecticut. I have confidence in my doctor and that is important. When I first met the Retina Surgeon, I was not sure what to think. I wanted to know if there were any malpractice suits against him and how he was rated. I was very worried. This web site helped me research that. The Drs. personality is not the greatest but he is a good surgeon. It's important for you to be able to trust your Dr. I said many prayers and keep saying them. I pray that there will be a way to correct Nicholas vision further but if that doesn't happen, I am thankful that this disease was caught in the early stage. I still worry sometimes about Nicholas injuring his non coats eye since he is so very active. Protective gogles help ease my fears somewhat. Feel free to post or contact me any time. I believe Dave is sending you my e-mail address.

Barb

Take care, Tracey.

Last Edited on 1-Oct-2008 5:02 AM