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• RP Symptoms in a Child
• Posted: 2007-12-25 21:32:43 By Michelle W
• What are the typical symptoms of RP in a child? Is it typical for the child to report that they can see trees that have Christmas lights on them at night but not other trees that are dimly lit by adjacent buildings?
  
  Thanks.
  
  Michelle

• Re: RP Symptoms in a Child
• Posted: 2007-12-25 22:09:41 By james n
• night blindness, difficulty finding small objects.

• Re: RP Symptoms in a Child
• Posted: 2007-12-25 22:25:56 By Darran Z
• Michelle,
  
  Yes, often if the lights are intense enough, we can see them and the "outlining shape" of the object.
  
  Here is a link that shows normal night vision compared to a night blind person.
  
  http://www.retina-international.org/nightbld.htm
  
  Darran

• Re: Re: RP Symptoms in a Child
• Posted: 2007-12-25 22:39:18 By Natalie C
• Hey Darran,
  Merry Christmas! I've been meaning to email you and tell you that SSDI did the same thing again this year with the increase in benefits due to the fact I continue to work. It ain't much, but they definitely recalculate the annual benefit after I file my tax return and send the retroactive increase.
  Hope all is well with the family. Was that you I saw copied on an email regarding the Neurotech implant and their decision to implant in 10 blind patients at Emory?
  Natalie

• Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 09:01:03 By Michelle W
• Darran,
  
  Thanks for this picture! The picture on night blindness is nearly exactly what our daughter reports seeing at night.
  
  Michelle

• Re: RP Symptoms in a Child
• Posted: 2007-12-25 22:35:32 By Natalie C
• Mainly nightblindness--can the child walk and/or run through the dark unassisted without running into anything, can they see the stars (like the big dipper)? I was diagnosed at age 12 and have never seen the stars (just some bright planets) and I used to run into bushes at night and step in puddles everyone else stepped over, etc. Not sure about the small object suggestion as you can have 20/20 acuity and still have RP. I had no other symptoms of RP other than nightblindness and was surprisingly diagnosed during an exam for possible lazy eye. Depending on how far the RP has progressed, the child may or may not be running into things around them (during the day)that most children would avoid. An ophthalmologist should be able to dilate and possibly see a waxy pallor and/or spicules in the periphery--this is assuming you don't want to do the "sure fire" test, ERG. When my oldest was a baby, she would drop her pacifier in her bed and I would spend several minutes looking for it with my hands so as not to turn on the lights and wake her too much. When I would find it I would just hold it near her and she could see well enough in the dark to grab it our of my hand and stick it back in her own mouth! That was my first test. When she got older I would turn out the lights and ask her to run across the room to me--which she did without any problem. She is now 7 and can still see wonderfully at night. But I'll always be testing. I'm doing the same tests with my youngest. I have no desire to put them through the ERG. Hope this helps.
  Natalie C.

• Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 08:59:36 By Michelle W
• Thanks everyone. Our daughter also has brain damage related visual impairment, so she runs into things during the day (although her acuity is 20/20), especially in busy places. She'll run into us unless we move or talk. She doesn't like going outside to play during the day and refuses to do so at night. Our daughter complains that there is no night lights in our hallway so she thinks she can not see well enough to get to our bedroom if she needs to.
  
  Our house looks like an airport runway. Our daughter insists on turning on all the lights in the house, night or day and complains about dim lighting.
  
  What's the best sort of specialist for her to see? A retina specialist? Is a 'normal' pediatric ophthalmologist likely to see anything?
  
  Thanks.
  
  Michelle

• Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 10:43:45 By Darran Z
• Michelle,
  
  Where do you live? What State? You would want to see a retinal specialist in this case. An analogy would be, say you have breast cancer. If you go see a general oncologist your evaluation and treatment would be very much different than if you saw an oncologist who specialized in breast cancer treatment. Thus, seeing a retina specialist that is thoroughly familiar with your daughter's visual impairment, such as RP, will give you a different and more thorough answer than a general ophthalmologist. I have always seen specialists since I was diagnosed when I was 6 years old (i'm almost 33) who happened to be FFB researchers as well.
  
  I'm intrigued by what you stated that your daughter has brain damage due to visual impairment. Do you mind elaborating on this?
  
  Another thing is you may need to start thinking of alternative ways for your daughter to accomplish things. In the sense, adjustment to blindness and learning how to do things the way blind persons do. The key is remaining independant and having the proper tools to remain independant is the key.
  
  Yourself may be interested in learning some of these tools as well. Hadley School for the Blind (Winnetka, Illinois, www.hadley.edu) is the only distance education school that is free to qualified individuals. YOu can join their Family Program and take classes there such as learning about visual disabilities, learning access technology, learning Braille, Adjustment to Blindness, etc. There is a host of classes. It's really a great resource for anyone.
  
  Darran

• Re: Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 14:16:05 By Michelle W
• Darran,
  
  We live in Cincinnati. I'm a bit surprised that none of the pediatric ophthalmologists (specialties are strabismus) have ever mentioned anything wrong with dd's (dear daughter) retina. She's had more dilated exams than a typical child because she has strabismus and brain damage related VI. Is it typical for for pediatric ophthalmologists to miss something like RP or vitiligo-related RP??? I'm surprised since what dd is describing clearly sounds like night blindness yet we've been told dd's eyes are fine.
  
  Dd has a brain injury called periventricular leukomalacia. This is usually found in preemies but dd was full term. Her damage is primarily in the parietal lobes, right side more than left. Her neurologist has diagnosed dd with Balint's syndrome. This consists of ocular apraxia (difficulty moving the eyes), simultanagnosis (ability to see only one thing at a time), visual inattention (functional visual fields decrease when given too much to look at) and optic ataxia (occasional mis-reaching resulting in spilled glasses and difficulty with stairs). In addition dd is unable to identify people by face despite normal acuity (prosopagnosia) and has difficulty seeing things that move fast. Things that move slowly and stop suddenly also disappear on her. The entire package falls under something called cerebral visual impairment in Europe and cortical vision impairment in the U.S. As far as I know, night blindness is not typical of CVI.
  
  We are very familiar with skills for the blind. In addition to dd's visual impairment, my dh (dear husband) recently lost his vision (ruptured globe and glaucoma).
  
  I've found that Hadley does a good job of explaining how to compensate for ocular impairments but hardly anyone in the U.S., including pediatric ophthalmologists, has much of an idea about CVI, at least not the type dd has (normal acuity). This area is still pretty new and developing fast.
  
  Dd is in a mainstream classroom with accomodations like an FM system (central auditory processing disorder), large print, computer and side shields (to block the motion she can't process). Braille was tried but large print with reduced clutter on the page seems to work better, although dd still has to read in short chunks and moves her head because she can't move her eyes well. We might revist Braille, depending.
  
  Michelle

• Re: Re: Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 14:42:12 By Darran Z
• Have you tried the Cincinatti Eye Institute? There is a doctor I know of in Columbus if that is a way to go. Pitsburg is another place. If you go to "Resources" and click on "Physician Referral" you can find FFB's list of doctors by State-City. If you go under "Resources" and then "FFB Medical Research Centers" you will get the FFB research centers and the list of doctors there. You might try emailing some of these people or calling and inquire of them. But I think that the nature of pediatric ophthalmology would likely miss these things. There are subtle differences between RP and what other eye disorders are that would change what the classification is an donly those familiar with RP like symptoms would pick up on this.
  
  I have found over the years and from talking to others that MANY ophthalmologists do not knwo what RP is like. Several of my friends are optometrists. They discussed this "by the book" but when I volunteered myself for them to physically exam my eyes they tell me it's nothing like the book. So those who are ophthalmolgoists in general or pediatric ophthalmology may easily miss these markers. It's quite common unless the individual is thoroughly familiar with the various symptoms/signs of RP. They can vary from individual to individual.
  
  But my guess is that if the retina actually looks normal, the nightblindness could be related to the CVI. I seem to remember reading something (somewhere) about this. But it is unknown since it is a new area for many people. It doesn't sound like she has RP bur rather is part of the overall package of thigns, while RP is common in other disorders such as BBS. But the sypmtoms of RP are present and can be detected. But I suspect that there is something else between the optic nerve and the occipital lobes where the visual cortex is processing the stimuli that could be hampering this.
  
  Darran

• Re: Re: Re: Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-26 18:36:51 By Michelle W
• Darran,
  
  What is BBS?
  
  I'd also be surprised if dd has RP - there's absolutely no family history of RP on either side, as far back as we can go.
  
  The only reason I started asking questions was an article about another person with vitiligo (condition where the body attacks melanin in the skin) and the mention that vitiligo can cause retina problems (by attached the pigment in the retina). I did a quick search and came across a few articles in the literature linking vitiligo to night blindness and RP.
  
  The only thing I want to know a this point is what is causing dd's nightblindness and is progressive.
  
  Given what's been published in the literature, it seems that vitiligo should be investigated as a cause of dd's night blindness and at least ruled in or out.
  
  Here's one publicly available article on the subject: http://bjo.bmj.com/cgi/content/abstract/67/3/153
  
  After some digging, I came up with two much more recent articles (2007 and 2003) on the same subject, which appear to say the same things as this older article. Other than these articles, there doesn't seem to be much information published on the relationship between vitiligo and the retina.
  
  Michelle

• Re: Re: Re: Re: Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-27 10:58:38 By Darran Z
• BBS is Bardet-Baid Syndrome (sp). RP is often associated with other diseases as well. And they are finding some studies linking it to autoimmune disease. Likely because of the autoimmune disease and not RP per se.
  
  Many of us who have RP do not have family histories. Because of the autosomal recessive gene inheritance patterns, you may not find a history of RP until the two recessive genes are paired up. (Read on Inheritance Patterns of Retinal Degeneration. Type that in the search box here at FFB).
  
  There could be something associated with CSNB (congential statutory nightblindness) which is not RP but just nightblindness. You may want to look into this if there are no retinal symptoms because CSNB often does not have pigmentation that is associated with RP. Just a thought and venue to look into.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: RP Symptoms in a Child
• Posted: 2007-12-27 13:29:13 By Michelle W
• Thanks, Darran for this information!
  
  Michelle