Please login to post a response.

• Treatment?
• Posted: 2008-03-19 19:42:04 By Elvia D
• My 5 year son was just diagnosed, what treatments can I seek for him now?

• Re: Treatment?
• Posted: 2008-03-20 00:24:25 By Darran Z
• Unfortunately, there are no treatment for RP. Most of the clinical studies going on right now are for adults. But there is promise and hope.
  
  Darran

• Re: Re: Treatment?
• Posted: 2008-03-20 22:22:22 By Elvia D
• Thanks for your reply. How bad does the blindness get. Should I have him start learning/adapting skills for low visibility or none?

• Re: Re: Re: Treatment?
• Posted: 2008-03-21 16:16:57 By Darran Z
• Each person progresses differently. I can only base it on my own experience. I grew up seeing relatively well. I'm now 33 years old, with less than 10 degrees and see 20/400 left, 20/200 right. That is quite severe, enough for me to utilize Braille.
  
  Some people do not progress as severe and retain relatively well visual acuity. It's really hard to say for sure. But it doesn't hur tto prepare.
  
  Since he is in school (or would be anyway) that you may want to request an evaluation by the TVI (Teacher of the Visually Impaired) or see a low vision specialist to see what adaptive equipment he may benefit from. You'd then also want to coordinate an IEP (Individual Education PLan) at the school to ensure all his needs are addressed as he grows older.
  
  Darran

• Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 17:32:52 By Helaine K
• Hi Darren,
  
  I wanted to thank you for answering so many of the questions put out on the FFB website. You are a good source of information and I have printed out some of your responses to people to show my sons doctor. Keep up the good work!!
  
  Best regards,
  
  Helaine

• Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 19:07:45 By Darran Z
• Uh-oh..now I'm really screwed! Who am I to argue with a doctor? :) LOL
  
  You would be the first to have done this. I'd be curious to hear the doctor's response is too.
  
  Darran

• Re: Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 19:46:21 By Helaine K
• Hi Darren,
  
  A friend was told by a doctor in Boston to put her young son on the high dose of Vitamin A. We have not seen a specialist yet so I have been picking everyone's brain I could get to. But, since this specialist told her she was crazy not to use Vit A I contacted my sons dr. Before we could talk I read a response you had written about not doing the vit A thing. You made a lot of sense. When I finally did talk to the dr I told him what you said and he firmly agreed! The dr in Boston is the only one pushing for the high doses of Vit A - at least that's what I've been learning. It is good to hear all different things about RP and then decide what is right for either yourself or your children. But, I do believe you have really educated yourself about RP and I know you will be a good resource for me and everybody else! Keep answering everyones questions!
  
  all the best,
  
  Helaine

• Re: Re: Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 20:10:23 By Darran Z
• Hi Helaine,
  
  Yes, Dr. Eliot Berson is the only one who is pushing the Vitamin A. You didn't have to say much as that gives him away. Alot of "reports" that support this point to his study, which is only one study. The NEI has done their own but I'm not sure whether they conclude the same or not. Most likely not.
  
  I have been fortunate to see some of the top researchers/clinicians throughout my lifetime. I have only seen 2, both whom are FFB researchers.
  
  But you are correct, people have to collect the information and hopefully view them objectively to determine their own decision. Both of my opthalmologists do not support this. One of them was involved with the original study in 1993. My current ophthalmology is a Harvard/MIT grad and knows Berson very well. But woudln't budge on the Vitamin A regime.
  
  But I think Berson's own failing is not understanding the genetics behind all this. I'm willing to bet that if he had a background in genetics, then he'd have a different approach. But that seems to be the factor that separate doctors on this very issue. My first ophthalmologist is both board certified in ophthalmology and genetics. My current is not but he does understand the genetics aspect of RP.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 22:32:06 By Helaine K
• Hi Darren,
  
  What I am learning about RP is that a lot of doctors do not know much about it. They do not see it often enough - my son is the first child my peds doctor has seen since he has been practicing. What I am happy about is that he is looking all this stuff up and open to hear what people like you have to say.
  
  Take care - Helaine

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 22:50:37 By Darran Z
• Yes, that happens all too often too. You'll definately get different answers/results from speaking to someone who is thoroughly familiar with RP as opposed to someone who is not. But glad to hear that your son's doctor is willing to look into it. Even so, it's important to find an RP specialist to follow your son thoroughly as this progresses.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Treatment?
• Posted: 2008-03-21 23:02:21 By Helaine K
• Hi Darren,
  
  We are heading down to CHOP in June - I feel somewhat more at ease knowing that we are seeing the RP specialist - not that there is much anybody can do but maybe it will make us feel better because we will be more informed. I'll let you know how it goes!
  
  Helaine

• Re: Treatment?
• Posted: 2008-03-21 17:27:29 By Helaine K
• Hi Elvia - my son was just diagnosed as well he is 7. His eyesight is good although he has worn glasses since he was 4. I noticed the night blindness this past year. I don't know where you live but I was told to see an RP specialist, we go in June. I believe finding other parents with children with this disease and talking to people who have it are very helpful. We were completly shocked with our sons diagnosis and cried for a week straight!! We feel a little better since we have our doctors all lined up. It makes you feel like you have some sort of control with a disease you cannot. I wish you strength on dealing with this - we all need it!
  
  Best regards,
  Helaine

• Re: Re: Treatment?
• Posted: 2008-03-25 00:04:10 By Peter F
• BE VERY CAREFUL VITAMIN A can be very detrimental to a young person. It may cause severe liver damage.
  My son has been on a vitamin regimen for 7 years under supervision of his doctor (Dr Jill Hopkins - LA Retina Institute). He takes 25,000 IU of Beta Carotene (Precursor to Vitamin A), 400 mg DHA, 6mg Lutein daily and 50mg Zinc twice weekly. His last check up in December showed very little peripheral or central degeneration. Whether this is due to the vitamins or not we do not know. However with the Beta Carotene you do not have the negative effects of Vitamin A. If it has any chance of helping we are continuing the vitamins.
  My son is now 18. His doctor who at the time of his diagnosis was Heckenlively at UCLA and provided the first recommendation. He also had recommended Vitamin E but my research found Vitamin E is detrimental for anyone with RP. His new doctor recommended the current Beta Carotene, Lutein, DHA and zinc.
  My prayers are with you as with all the young people and their parents.
  Peter
  

• Re: Re: Re: Treatment?
• Posted: 2008-03-25 16:47:38 By Elvia D
• Darren, Helaine and Peter,
  Thank you all for your responses. My son was just diagnosed last week and I am trying to get as much information as possible.
  
  Helaine, I live in a Chicago suburb. The retina specialist we saw last week scheduled my son for an ERG in May. If you know where I could find a RP specialist please let me know, so that I can try to schedule an appt with him/her.
  
  I will talk to his pediatrician about the vitamin A, since he was born with a heart problem, anything he takes needs to be run through his cardiologist first.
  Helaine/Peter, is your son learning braille or are you having him learn other low vision adapting skills?
  Thank you again all for responding, I am glad to know that other children that were diagnosed still have good vision, I thought he will lose vision faster because he was diagnosed younger.
  Darren --I will definitely take your advise and get more information at school, he will start kindergarten in Sept. so it will be great to get him as informed as possible now.

• Re: Re: Re: Re: Treatment?
• Posted: 2008-03-25 21:24:43 By Peter F
• Again be careful as Vitamin A is damaging to young children, ask about Beta Carotene.
  
  My son's mother and grandmother both have RP so I was not completely surprised when my son was diagnosed at age 10 with RP. The surprise was that my ex-wife was very uninformed and knew little about RP other than she was losing peripheral vision. Every person’s RP is different. Where my ex still drove until she was 50 as did her mother, my son will never drive. His RP from diagnosis at 10 until about two years later rapidly advanced. He lost all night vision, his peripheral vision diminished rapidly and he has islands of pigmentation causing blind spots. He started the vitamin regimen about 11 but DHA was not part of the original recommendation. He started the DHA about 14 or 15 and it appears to have slowed his deteriorating vision or something else did as his vision stabilized for two – three years. Maybe a coincidence we will never know.
  As to his learning Braille or other life preparations we are doing nothing at this time. At 14 he said “Dad no more tests, no more visits, I just want to be normal for a while”. I honored his request and until we went to see his doctor in Nov we did not think of RP. After a great visit in Nov where we learned that his peripheral and Central vision had seemed to not deteriorate over several years we were overjoyed.
  We (more me than my son) are devastated over his right eye retina detaching and tearing in January. Tissue thin retina is another side affect of RP. The first operation was successful with his sight returning to pre-op levels within two weeks. His retina detached in another place two weeks later. The second operation was successful in attaching the retina but his sight is not returning.
  This long-winded answer does have a point. Be very careful how you treat your child, we as parents are more concerned, more devastated and tend to overprotect, over prepare and generally overwhelm our offspring.
  Do all you can but let your child be a normal child as much as possible! Keep the tests, doctor’s visits, discussions and life preparations to a minimum. It is very hard, but enjoy most of the time with your child as if RP did not exist.
  Peter