Please login to post a response.

• RP in children
• Posted: 2007-12-08 09:56:01 By Carrie N
• Hello my son is 10 years old and was diagnosed with RP 2 days ago. I am completely devastated. He was dx with buried drusen 5 years ago and has been monitored for that every year by a pediatric opthamologist. The retinal specialist also saw him and performed an retinal UltaSound 5 years ago. He just gave me the dx and I had heard of it before so he offered no other info and said he would see us again in 2 months. All he did was take a hx and briefly looked into his dilated eyes. He has no problems with night vision. Can he give an adequate dx by just looking into the eyes? Should i get a 2nd opinion? I read that it cannot be definitive without the ERG and that spots don't appear until the conditioned is worsened. We have no family hx.
  
  sincerely,
  Carrie
  Indianapolis,IN

• Re: RP in children
• Posted: 2007-12-09 16:21:59 By Darran Z
• Carrie,
  
  RP is associated as a high risk with Drusen.
  
  http://www.revoptom.com/handbook/sect5q.htm
  
  If the doctor is thoroughly familiar with RP he/she can diagnose it without an ERG. The symptoms for RP may vary from individual to individual due to many factors. But the ERG is what confirms it because if someone doens't exhibit the symptoms fully blown, the ERG results still will be abnormal.
  
  Darran

• Re: RP in children
• Posted: 2008-03-02 22:57:31 By Kim V
• Carrie,
  
  I know that I am very late with a reply for you, but I have jsut recently found this web site an am looking through some of the old discussions to ease my mind in some of my recent decisions.
  
  first have you had an ERG done? Is the RP confirmed.
  
  Just to let you know I was diagnosed around 15 with RP when I had to go to an eye surgeon to remove a piece of cornsilage from my eye, yes I am a farm girl, I have always worn glasses (starting in 2nd grade) and always had regular check ups and updates to my prescription lenses, these doctors did not find this condition.
  
  The first memory I have of having any trouble with night vision or vision in general was when I was in the 6th grade, We went on a field trip overnight and we took a walk around 9pm and I rember asking my teacher when I would be able to see in the dark after we left the cabins. I think it took my eyes around 10 minutes to adjust and then all was fine, so when you say that your son is not having outward signs, I would say that this is probably normal.
  
  I have what is called the recessive form of rp, I have no family history of blindness on either my parents blood lines. So I inherited the disease from carrier parents. The long and short of it is that there was a 25% chance of my parents having a child with this form of RP, they both carry the gene but have no symptoms, so it took both of them of give me RP, I have a younger brother who does not have RP, completely normal.
  
  I would tell you also that I am 36 years old and am just starting to have real trouble with the everyday things, mostly driving, glare and significant loss of periferal vision. I have a cataract in my right eye that will have to be delt with this year, but other wise, I have had a very full life. I am a graduste of Cornell University and until this month have had a very sucessful career in Agri business.
  
  I know that this is very wordy, but know that my family and I were in your shoes over 20 years ago and life is funny, I never thought that I would get this far and I have. You have your faith and your family, and that is all you need to be sucessful, I had a wonderful elderly lady tell me when this happened to us that god never throws more at you than you can handle, and after all these years I know she is right.
  
  The best thing you can do is get educated on the condition so that you best know how to deal with all of this in your way, and never let your son think that he can't do something (be realistic...but don't discourage him) My parents kept me going and never expected anything less than my best effort no matter what...Good luck to you and take care...Kim