If I were in your shoes I'd find another retinal specialist who you have better rapport with and who can answer your questions. Your child is going to need to be examined frequently over the years and you want the doctor who does that to communicate with you effectively.

Please remember that Reddit $1. Feel free to post comments with general advice. However, any comment recommending a specific course of treatment, or giving specific medical advice, will be removed.

Definitely try to find a new retinal specialist that has a bit more bedside manners.

Don't try unproven medical treatments (especially homepathic/naturopathic treatments) that isn't prescribed by your doctor. I've known a few clients who tried and did more damage.

I'm waaaay late to this party, but turns out XLRS is a _very_ specific search term. 38 year old person with XLRS over here

Hi, I have XLRS and I'm a 33 years old male. My life has been pretty normal so far, despite being almost blind from my right eye. In my case my "good eye" (the left one) has allowed me to live a pretty normal life -- driving, sports, etc. Unfortunately in the last couple of years I can feel my eyesight deteriorating... Using the pc is becoming a bit of a challenge. Cataracts may be one of the reasons for that.
If you need more details just ask here or by private message, good luck!

I'll echo everyone who says "see a new specialist." You need someone who can work with you and your kid.

> Is there any hope?

There are potential medical treatments in the works, which is something that you can discuss with the retinal specialist. More importantly, there is *always* hope for your child no matter what their vision ends up as or what the state of available treatments is. He can live a normal, productive, and happy life regardless of what level of visual acuity he ends up with.

The national organization of parents of blind children http://nopbc.org/ is a fantastic resource to connect with parents of blind and VI children and get information and resources that you need.

Hello, fellow parent here. My daughter is two with a different genetic retinal disorder. She was diagnosed when she was 6 months old, so I can certainly relate to what you are going through. I remember those weeks of feeling "devastated and destroyed" and feeling helpless. I am here to tell you it gets better. I had to go through a grieving process for the life I imagined my daughter would have, but didn't even realize that I had in my head. Focus on what you can do.

First, absolutely get a different retinal specialist and/or ophthalmologist. You absolutely want someone who has a better bedside manner and will answer any questions that you might have.

My family is involved with the $1 which funds research for inherited retinal conditions. You should be able to contact a local chapter and be put in touch with other families with the same condition and get information on the latest treatment or gene therapies.

Even if there is no treatment currently that doesn't mean there won't be one in the future. That said, you also need to prepare him for the world currently. You should contact your school district so they can begin providing services for his visual impairment. He might not meet the legal definition of "legally blind" currently, but he might in the future so he should qualify for services.

Please feel free to PM me if you need any more information, or just someone to talk to.