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• daughter recently diagnosed
• Posted: 2009-03-09 21:07:07 By Scott S
• My 9(10 this month) yr old daughter was diagnosed 6 weeks ago with RP. I think we have taken the normal parental steps. Research, be depressed, resarch some more, call a bunch of Dr's, call the FFP, etc. She has an appointment with Dr Berson in May. We have started her on 5000(iu) vitamin A daily, tuna for dhea twice a week and sunglasses outside at all times. No one in our family that we kno of has RP. So...if anybody has comments:
  
  1.My biggest fear is she will lose her vision in childhood. Dr Berson has stated his machine can give an estimate on the number of years of vision, so we will see in May.
  
  2.We have not let her know the true diagnosis. She plays soccer and tennis, has some loss of field but it is normal to her.
  
  3. It makes me very sad for her.
  
  Anyone have any words of wisdom, encouragement, advice?

• Posted: 2009-03-09 23:17:25 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: 2009-03-10 20:52:44 By Scott S
• Stephen, Why are you not using the Vitamin A? My email is scottandsmith@hotmail.com if you want to reply privately.
  
  Scott

• Posted: 2009-03-12 12:44:23 By Eddie L
• Hello,
  
  i have Usher syndrome . Found out about my hearing when iwas 4 yrs old started wearing hearing aids at that age . found out i had RP when i was 15 . And now i am 45 yrs old and all i can tell you is as a parent you should support and treat your child no different that normal. If the child gets in troulbe she gets in troulbe, she does good she does good. just treat her like a normal child and she will be fine. the child needs to know what she has and what to expect. , there fore i would tell her what is going on so you can start the process of accepting what she has, and make adjustment as you go. nothing to be ashamed of. I was always a joker when i bumped into things or could not see something... have to have a sense of humor with what we have, can not make ppl be afraid to be around the child or worry about saying something to hurt her feelings. it is all part of the process. I am a believer that there is a fix for this in the near furture . just be patience and in the meantime like ther be a kid! travel, do fun things while you can .
  
  Eddie

• almost 6 y/o son recently diagnosed
• Posted: 2009-03-12 13:37:57 By Kim S
• Hi Scott,
  I am so soory to hear about your daughter's diagnosis. I know exactly what you are going through. My almost 6 y/o son was just diagnosed last week, and I feel devastated. We are taking the same steps as your family. My son also has an appointment in May with Dr Berson (May 14th). I am hopeing he will be able to provide us with some direction. I hear he is wonderful... Just wondering where your family is located, and how you learned of Dr Berson? Also was wondering how you knew the appropriate amount of Vitamin A to start her on, as we are unsure. We also have not told our son of his diagnosis, and are very confused over the best thing to do. My heart tells me to wait. I am hoping Dr Berson may be able to provide some insight into this as well. Again, my heart is with your family, any insight you have discovered so far would be much appreciated

• Posted: 2009-03-12 23:35:59 By
• Kim,
  
  I typed two long responses and for some reason an error page pops. my email is scottandsmith@hotmail.com shoot me an email and I will respond. My wife and would be happy to talk too, as we understand the diffiulty of the first few weeks after diagnosis.
  
  Scott

• Posted: 2009-03-23 12:29:08 By Megan M
• Scott,
  I was in your daughter's situation, but I was 6. Thinking back I remember that I felt different than my friends at night...more scared. My parents picked up on this and a diagnosis soon followed. I can't even remember how/when my parents told me-it doesn't even matter to me now. I do remember that as times in life came up that it actually impacted what I could do, it was/is devastating whether I truly understood it or not. My specialist decided I would be total before I reached highschool. I am now 23 and still have some useful vision. My parents told me that prognosis but neither I nor they let it define my childhood. I think regardless of what approach you take with your child there will be rough times and times when it is no big deal. Good luck and I hope your child has many many years with useful vision.

• RP
• Posted: 2009-03-28 22:15:29 By Jill M
• You are going to the best Dr! He headed up the study I was in for vitamin A. I have taken it for 21 years and still drive.
  Good luck]
  Jill

• canadian treatment
• Posted: 2012-08-01 17:18:47 By Rob S