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• new diagnosis of 4yr old- Advice
• Posted: 2007-12-18 21:09:43 By Tab V
• I am hoping that maybe someone could give me some advice on what I should be doing to help my 4 yr old son. He also has mild optic nerve hypoplasia and now they have added RP. As close as they can tell his vision is 20/80 in both eyes and cannot determine peripheral at this time due to his age. If anyone has any advice because at this point I don't even know or understand how visually impaired he is as to what services he may need or be eligible for. He is night blind for sure and on dark cloudy days and such. He is so resilient that I am not sure how he is actually affected and does fine at home, but I have no idea what the world looks like to him. His hearing has intensified and memory is out of this world. Is this the other senses starting to pick up? What measures may need to be in place for him at school? Does he need to start learning braille and white cane? Thank You!!!

• Re: new diagnosis of 4yr old- Advice
• Posted: 2007-12-18 23:15:26 By Darran Z
• Well, from my experience (I was diagnosed at the age of 6 so not too much older than your son).
  
  As far as education goes, you would likely want to get him evaluated for what he needs. Because of his diagnoses he will qualify for any services associated with education for Visually Impaired (including the State School for the Blind). That might be a place to start and contact them. Sometimes and often they have a program for children his age that they can get th ings started with. If you decide to keep in mainstreamed in public schools, then they would be required to provide that too.
  
  I was taught Braile and Mobility skills (white cain training) when I was in elementary school. While I was mainstreamed, I did have Mobility instruction from the School for the Blind. The Braille instruction came from my TVI (Teacher of the Visually Impaired).
  
  If you want to learn Braille and learn a few things yourself, you can join the Family Program at the Hadley School for the Blind (www.hadley.edu). They teach Braille. and other classes to assist family members understand blindness. It is a very valuable resource. It started out with a single student in the 40's but today, they have over 10,000 students worldwide. It is a non-profit and is free. Beleve me you, I have just recently been to the School as a student award winner this October and they are well financially backed! So don't feel hesitant to look at the information and join the club. I personally know the President of Hadley (He used to be the Director of the Oregon Commission for the Blind when I was growing up. So a small world).
  
  As for the senses, yes, when one sensory is not as strong, the other senses pick up. It is true for those with blindness, tend to have keen hearing and vice versa for those who are deaf, they have keen vision. When you are deaf-blind (like myself, having Usher) my smell is quite keen.
  
  Darran

• Darran Z.
• Posted: 2007-12-20 19:55:50 By Bradley C
• Hey pal! I just signed up for hadley yesterday now I've got to get my papers signed from my eye doctor. I joined the ACE Program. Maybe they will accept me and I can brush up on all of my high school and college skills. Math, History, English, those sort of things. Anyway, wish me luck! I am going to take their classes to help with the blindness part of life as well. Thanks for showing us that info.

• Re: new diagnosis of 4yr old- Advice
• Posted: 2007-12-22 10:03:20 By Carl S
• Our son James was diagnosed when he was 3. It was devastating news. I might ramble here but we've learned quite a bit over the last 2 years.
  
  a) the worst thing we did was an ERG. It was torture for James and myself as I had to restrain him during the testing. Imagine Clockwork Orange but with metal contact lenses instead of eyelids being propped open. Seriously, it was a mistake, and did not lead to any treatment. Maybe when he is 12 or 15, but certainly not 3 or 4. The only saving grace for him and us is that he doesn't remember.
  
  The scary part is the advice varies depending on doctors. Some are more holistic and understand the potential negative effects, and some are more mechanical and believe that exhaustive testing is necessary.
  
  b) I don't believe the accuracy of the vision tests unless performed by a doctor (optometrist) (i.e. not an assistant) that specializes in children. We went to a well regarded retinal specialist and he actually believed his nurse's vision test... it was a joke and he wasn't even there. The nurse was impatient, and the test lasted maybe 5 minutes.
  
  c) Have your child wear sunglasses any time he/she is outdoors. Here's a source of sunglasses... (12 pairs for $18)
  http://www.jcptrading.com/ (go to the children's section)
  
  d) do not allow any doctors to take photos of your child's retinas (yes this happened to us too) The flash is potentially damaging
  
  e) James has carrot juice every morning... mixed with just a bit of OJ.
  
  f) Where do you live? If near NJ I can recommend a wonderful optometrist... even would be worth traveling to see her.
  We live in St. Louis and I am considering flying back with James to see her.
  
  g) We are still feeling our way through this too... and it' really hard to tell if his vision has changed... he's definitely night blind, but does well in familiar surroundings. His peripheral vision is not normal, but again it's hard to tell by how much.
  
  I'd love to hear back as our children our close in age...!!
  
  

• Carl S.
• Posted: 2007-12-22 20:56:54 By Tab V
• He has already had the ERG, which thankfully they put him under general anethesia, we weren't present through the testing. He has seen a retina specialist and has seen a pediatric opthamologist and they are referring us to another specialist that deals more with these disorders was all we were told. Haven't gotten things kicked off with the school system yet, due to the holidays, but will be kicking that up after the 1st of the year.
  Does the sunlight make things progess more rapidly is that the reason for the sun glasses or is James just more sensitive to the bright light? Even when his eyes are dilated he won't wear the glasses. I look forward to hearing back from you. Oh, and we are in the central Texas area, and the specialist is in Houston. Thanks for responding!!!

• Re: Carl S.
• Posted: 2007-12-22 22:51:15 By Marisa P
• Tab,
  
  Just wanted to add that the reason for sunglasses is because the sunlight is very damaging to the retina.
  
  

• Re: Carl S.
• Posted: 2007-12-23 10:51:53 By Carl S
• James is sensitive to the sunlight, and it is damaging to the retina. We didn't have too much trouble convincing him to wear the glasses. My layman's understanding is the retina cells won't regenerate after sunlight damage like a normal persons retinas. Try the JCP Trading Glasses... they look cool, and fit properly. Not sure how to convince him... just be persistent??

• Re: new diagnosis of 4yr old- Advice
• Posted: 2007-12-27 13:49:37 By Katie V
• Tab v
  
  Sorry to hear about your son, RP is a tough diagnosis. My name is Katie and I am the mom of Meghan 12 with RP. She was diagnosed at 11. She will be 13 in March YIKES.
  
  When she was first diagnosed I was shocked. We had never even heard of RP before. Her visual fields are 20/25 without glasses and 40 degrees peripheral ( which does not seem to have changed much) she is night blind but never ever complains. In fact she makes RP very easy for us. There is not a day that goes by that I dont think about her future and life. It is tough.
  
  I have started a private Yahoo group called, Parents of Children with RP. This site has been wonderful in advocating it. It is private as we talk openly about our children and share photos. Though privated we always look for new members. Should you want to join just give me your email address and I will invite you.
  
  You will get fabulous information from this group of people. 20 months later I have realized that life does go on.
  
  Katie

• Re: Re: new diagnosis of 4yr old- Advice
• Posted: 2008-01-02 20:53:33 By Marsha F
• Hi Katie -- I'm interested in joining your group on Yahoo. My five year-old son was diagnosed with a yet to be determined eye disease this summer (right now our doc is thinking rod-cone dystrophy). At this point his vision seems quite normal and he's not experiencing any night blindness. . . so we're praying the progression will be s-l-o-w. Like most others, we went through a pretty dark time while trying to come to terms with this news; however, we've emerged from the darkness and are living a very normal, positive, and active life. Best to you!

• Re: Re: Re: new diagnosis of 4yr old- Advice
• Posted: 2008-01-03 10:43:10 By Katie V
• I am so glad you want to join the group. I need your email address.
  
  Thanks
  
  We all look forward to getting to know you and your child better
  
  Katie

• Re: Re: Re: Re: new diagnosis of 4yr old- Advice
• Posted: 2008-01-03 16:44:54 By Marsha F
• Thanks -- my e-mail is mcfortney@yahoo.com. :-)