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• Son just diagnosed with RP
• Posted: 2008-09-30 14:33:34 By Christina F
• Hi there, I am new to all this and trying to see if theres a support group for parents of teenagers with RP. My son is 16 and has no side vision and cant see at all in the dark. We were told to take Vit. A, any other suggestions. Thanks

• Posted: 2008-09-30 18:49:45 By Thomas P
• Hi Christian F...
  
  Yes, there is plenty of supplements to take.
  
  Lutein - 20mg 2x daily with zeaxanthin
  Fish oil - 2000 i.u. 2x daily with DHA
  Vitamin A - palmitate 15,000 i.u. if you can find it.
  Zinc - 50mg daily
  Vitamine C - 1000 mg 2x daily with flavenoids
  Blueberry or billberry - not sure what dose
  
  Try this for starters.
  
  If your son is young, fear not as a cure will occure in less than 5 years.
  
  Regards

• Thank you
• Posted: 2008-10-01 11:30:21 By Christina F
• Hi Thomas, thanks for all the Vit. info, but just out of curosity wont taking all these affect his liver? I know now were in a catch 22 so to speak, dammed if you do, dammed if you dont situation right??? Thanks again

• Posted: 2008-10-01 14:36:29 By Thomas P
• Hi Christina...
  I don't think so.
  However, to be sure, check with the doctors that you intend to see. Also "Google" the various
  items for info. I don't think any of them are toxic. Although thesea are "adult" doses, your son at age 16 is approaching adulthood.
  
  If he has the x-linked (inherited) form of RP
  like I have, at his age he will be fine. I am 54 and am just now approaching my retinal end stage status.
  
  Best regards.
  
  P.S. - It is often said that the power of prayer can help. Do you think if we all on this forum prayed at the same time it could help? Just a thought.

• Posted: 2008-10-01 19:49:58 By Christina F
• Hi Thomas,
  To be honest with you, I dont know how my son got this eye disease. Not sure if he inherited it or what. If you dont mind me asking, when did you find out about you having RP? Also did you go see an eye specialist who deals directly with RP, or just your eye care provider?
  
  Now about the power of prayer, you bet I believe!! I firmly believe that if God brings you to it, He will bring you through it.
  
  God bless you,
  Christina

• Posted: 2008-10-02 11:05:54 By Thomas P
• Hi Christina...
  
  I was diagnosed with RP in 1984
  at age 30. No specialist in my city
  until 1988.
  
  I'll work on that power of prayer.
  
  Thomas P.

• Posted: 2008-09-30 19:35:48 By Marisa P
• Hi Christina,
  
  In addition to supplements, it's important to eat healthy, lead a healthy lifestyle and understand that he needs to stay away from smoking and other things that may harm the eyes.
  
  There is a support group for parents of children with RP run by Katie, the mom of a teen with RP. If you like, I send me your e-mail address and I will forward it to her. It is a private group. mpostlewate@yahoo.com
  
  Marisa

• Thanks for the reply's
• Posted: 2008-10-01 11:24:36 By Christina F
• Thanks to all of you for your responses. This is all so overwhelming for my husband and I. We just found this all out on Friday the 26th of Sept. that our 16 yr old son has RP. We will be going to specialists, neurologists and endocronoligist to find out what kind of RP, I think.... I just cant imagine him going through life in total darkness, I am so devastated! I am trying to be strong for him when he's around, but when he leaves for school I'm a mess. I know its all new to us and were trying real hard to just give it over to God and just keep on praying for the best. May God bless you all and thanks again for the advise.

• Posted: 2008-09-30 21:20:30 By Colleen P
• Hi Christina,
  You have certainly come to the right place. This FFB website has been my life line since my 19 yr. old son was diagnosed last year with cone-rod dystrophy. It isn't just the same as classic RP, but we are all in this with a degenerative eye condition.
  Even though I do not post very often, the parent group started by Katie was a great help to me too. Just talking to other parents in this very rare situation made me feel less isolated!
  There is so much hope too as the scientists are attacking the problem on different fronts as you will learn as you find out more. This foundation is so proactive which is why I am totally behind it. Hang in there! Colleen

• Posted: 2008-10-06 11:31:40 By Darran Z
• Christina,
  
  I'm not a fan of supplements. There is alot of contreversy surrounding this. Not everyone at the FFB supports this. Two of my own ophthalmologists who are on the FFB's Scientific Advisory Board are not supporting this.
  
  But let me ask you this: How much visual field does your son have? According to the studies, those with less than 10 degrees do not benefit from Vitamin A since all the rods are extinguished. Which makes sense. The vitamin A is generally in rods, not the cones.
  
  The other aspect you have to understand is that this is a genetic disease. Your son likely has autosomal recessive which explains why he's th eonly one in the family. Both you and his father were carriers of this gene but not affected by it.
  
  My only advice is to research t hings carefully and thoroughly. There is alot of subjective results in many studies, and many are inconclusive as well.
  
  Darran