Re: Looking for info or Support about a VB for yourself or a Youth or older?
My son has a PWS on his left eye.* He is 15.
We did laser treatments for two years about ten years ago, down at Children's Hospital in Philadelphia.* There was some lightening, but it didn't last.* We finally got to the point where they told us that they had done all they could do.* *We have not attempted any treatments since.* I always wondered if there was anything else we could do.* We live in the Bethlehem, PA area.
Is there anyone in our area that is experienced in this kind of treatment?* I see only three doctors listed for PA.* If anyone has any experience with any of these, (or NJ), please let me know.* *Our insurance will probably not cover any treatments, so it's very important that we deal with somebody who will not just take our money to perform some fruitless therapy.
How much have laser treatments progressed in the last ten years?* Is it true that they are all only temporary?* How often must they be repeated?
What preventative measures can we take regarding glaucoma?* He had an eye exam today, and the doctor noticed some irregularity in the nerves (although his eyes are fine right now).
Thank you for your support, and for just having this forum.