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• We are so confused and frustrated
• Posted: 2008-03-31 13:05:28 By LaTuana M
• Hi,
  Our daughter was diagnosed with RP when she was 10, 3yrs ago by a local specialist. We traveled to OHSU Casey Eye Inst. and they did a ERG and it was normal. She was diagnosed there as having Pigmentary Retinopathy of unknown origin (she has the granules developing on the back of her retinas.). She also has some minor periphial loss from the vision field test. Her acuity is at 20/25 both eyes. She also is photophobic (light sensitive).
  Her grandmother has RP as well as her great aunt. Her father is starting to suffer night vision but does not want to be checked at this time.
  O.K. this is where we were at 3 years ago now to the present. She just had a checkup last week and the opthamologist found small cortical cataracts in both eyes that developed over a 10 month period. I was told by the Opthamologist that these are not normal for RP and to see the specialist up in OHSU soon. Has anyone out there also been diagnosed with cortical (front of the eye) cataracts and have RP?
  Help. I am so confused and frustrated because the answers seem so incomplete from the Opthamologist. As a mom, I want to control a situation that seems so out of control. I am trying to count our blessings that she can see pretty good right now, but I don't know if this new development means we need to start planning for visual aids sooner rather than later. I would appreciate any advice. Thank you.

• Re: We are so confused and frustrated
• Posted: 2008-03-31 16:07:58 By Darran Z
• Hi LaTuana,
  
  First let me ask, who did you see at Casey Eye? Was it Dr. Weleber? Dr. Frances? I'm originally from Oregon so I have known Dr. Weleber since 1981 who diagnosed me with RP as part of Usher Syndrome.
  
  I'm willing to place bets that whomever you saw at Casey is correct. The fact that the ERG is normal will exclude RP altogether which is why they put down the diagnosis they did (pigmentary retinopathy of no origin), retinopathy means disease of the retina. So in this case, they don't know what is causing this because the ERG resulted normal. People who have RP have flat ERGs if ever measurable at all. So that is the key right there.
  
  The fact that your daughter has a retina disease will increase her risk for other eye conditions such as cataracts. People with RP develop PSC (Posterior Subscapular Cataracts), so cortical cataracts would not fit RP either. I agree, that she should be examined by someone at Casey. If you can, Dr. Weleber would be the best. He's very well respected researcher and clinician around the world. Simply "the best in the West" is an understandment!
  
  Darran

• Re: Re: We are so confused and frustrated
• Posted: 2008-03-31 17:31:47 By LaTuana M
• Thanks so much. Yes, she is seeing Dr. Weleber because he is so thorough and learned. He is going to perfrom a multifocal ERG and a VF on her this summer. I hope he can shed some light on what may be developing because of the cortical cataracts. Thanks again for your advice.
  LaTuana

• Re: Re: Re: We are so confused and frustrated
• Posted: 2008-03-31 17:58:46 By Darran Z
• You are in the best hands in the business! Trust me when I say that because I have the upmost respect for Dr. Weleber. I have known him for so long, since I was 6 years old that he knows his stuff. If he says otherwise, even though your family has RP, he knows what he's talking about. Trust me. Sometimes things can be a little baffling, or we don't always understand until technology advances or more information is known. I miss him dearly for his bedside manners and frankness he is about something. He's very direct and won't hide anything and will give his best opinion.
  
  There are a few other posters who see him regularly too and could vouch for him.
  
  Now, on the flip side, is your daughter getting services she needs at school? Do you live in Oregon? Washington State? Because your daughter is 13 or there abouts now, I'm assuming you will be preparing for college etc. You would want to be in contact with the Oregon Commission for the Blind for Vocational Rehabilitation services (VR) or the agency in Washington State. They help with financial assistance for college, etc and anything your daughter may need. If you want more information, please email me privately and I'll get that to you. My email is darranzenger(at)yahoo.com if you have questions.When she's old enough to work and obtain a Worker's Permit, she'd be able to participate in a program called SWEP (Summer Work Experience Program) that the OCB has for teens. It's a great program as I worked for OCB for two summers during SWEP as a counselor and mentor to the kids.
  
  Best of luck!
  Darran

• Re: Re: Re: Re: We are so confused and frustrated
• Posted: 2008-04-01 11:39:07 By LaTuana M
• Right now we are in Nevada and planning to move, due to lack of assistance. I had to pull her out of regular school because she was starting to fail her classes, due to her vision. She told me she was feeling like a "loser" because she couldn't keep up. The school just didn't have the experience, the teachers or the time to work with her. I have been homeschooling her, but it is increasingly becoming a challenge. I'm doing the best I can, but I know there are more experienced teachers out there who know how to educate her in way that will help her increase in confidence. We are planning to relocate soon to an area near Portland. We do have family in Oregon, but we also like WA, so it's a toss up.
  If you could recommend either State, which one do you think brings the most to the table? I want her to be in a environment where she doesn't feel alone or less of person because she may not be able to learn at the same pace.
  Thanks again.
  
  LaTuana
  
  
  

• Re: Re: Re: Re: Re: We are so confused and frustrated
• Posted: 2008-04-01 11:49:46 By Darran Z
• Have you considered a School for the Blind? If I had to choose, then it would be Washington State. There is a school for the blind in Vancouver. I don't have high confidence in the Oregon School for the Blind.
  
  The way things work in Oregon is that each Region has an Education Service District, which pulls the TVIs to the schools to assist the schools in meeting the needs of Special Ed Students. That is what happened with me while growing up as I was mainstreamed. I was in a very small rural district that I was the only one who was VI and deaf but the ESD was wonderful in addressing both these needs for me.
  
  I know if you were in the Portland Metro or even in Salem that the ESD would do well.
  
  I don't know how well your daughter sees at this point or what the prognosis is to really say which route to go. The Schools for the Blind are a good option but not for everyone.
  
  Both provide services pretty much equally for the blind as far as services go for college help, etc. I don't think Washington State has a SWEP program so that is an advantage in Oregon (other counselors came from the Washingtong School for the Blind in Vancouver to work with us in the summer). If you want to email me, I will ask around to a few contacts I know up there and see what they say.
  
  Darran

• Re: Re: Re: Re: Re: Re: We are so confused and frustrated
• Posted: 2008-04-03 11:38:31 By LaTuana M
• I will email you in the future. I would say her vision is fair right now. Her local opthomologist is experimenting with different prescriptions to get her a visual acuity as close to 20/20 as she can. Thats saying a lot because her last glasses left her with 20/70 visual acuity in both eyes. The hard part is keeping her from not giving up on learning. Sometimes I just don't know which way to go with her education to keep her motivated. I have no training in that field. As a mother I want to comfort her, where as a teacher I want her to see the value of learning and that you can't give up and have a "what's the use" attitude. I wish there was a website where she could talk with other teens facing different challenges and still overcoming them. At least until we can get moved.
  I am hoping we can sell our house this summer so we can move asap. I really do want to thank you, you have made one mother less frustrated and fearful. I am saving your email for future need when we hopefully find out more this June, with Dr. Weleber. Thanks again.

• Re: Re: Re: Re: Re: Re: Re: We are so confused and frustrated
• Posted: 2008-04-03 12:21:21 By Darran Z
• You can ask Dr. Weleber about this as well. He used to be the Chairman on the Board of Trustees at the Oregon Commission for the blind, years ago. So he's quite familiar with services at least from the OCB. So he might have some input as well.
  
  Darran