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• Posted: 2009-03-09 22:13:25 By Stephen S
• I understand what you are going through. Our son was diagnosed July of 2007 and he had just turned 7 years. I have spent hour after hour since that time reading everything I could get my hands on. In January of 2008, we took him to see Dr. Berson. My wife and I really like him. He is GREAT with kids. His estimates are only estimates, and obviously not exact science. We have not been using Vitamin A (even though he obviously recommends it), and our son will not eat fish. We purchased him transition lenses, which he uses at times. Dr. Berson will tell you not to concern yourself with sunglasses all the time.
  
  We also have no history in our family. Our son's night (and low light) vision is very poor. And he has some peripheral island losses. But he can hit a pitched baseball, rides his bike and scooter, and lives a normal life. He is on the swim team, does gymnastics, and plays like an 8 (almost 9) year old boy.
  
  What have we told him? This is the controversy. So many parents on this website have said "we have told our child everything, and you need to do the same". Here is my response: you do what you think is right for your child and your family. We first told our son that he had a condition affecting his night vision. Recently I told him a little more, explaining peripheral vision. Next step - who knows. But my wife and I did not see the advanatge of telling our son it will continue to go downhill. Since no one knows how bad, or how soon, we did not see the advantage of telling him. And Dr. Berson agreed 100%.
  
  It is painful, and I know how hard it is. But remind yourself that research is moving so fast (gene therapy, implants, and now as of today with President Obama's signature, stem cell). We may have something soon for our kids.

• Posted: 2009-03-09 22:44:21 By Maria P
• I agree that every case is different and sometimes it is best to give the child only the information he needs, especially at the age of 8. It can become an issue as the child gets to driving age and it is then that the parents need to know just how much peripheral vision is lost before consenting the child to drive. At this point night driving is out since his night vision is poor. Nobody knows what is in the future. I wouldn't have done anything but curl up in a corner had I followed the doctor's advice. Instead, I decided to move on and live a fulfilled life, always knowing my limitations.
  
  Just make sure that he eats as healthy as possible as more and more doctors believe that diet can make a difference. If he doesn't eat fish, get him some Omega 3 capsules as they are great anti-inflammatory supplements.
  
  I don't know if you belong to the yahoo group for parents of children with RP. If you don't and are interested, e-mail me at mpostlewate@yahoo.com
  
  Marisa