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• Anything new with XLRS research???
• Posted: 2009-06-25 23:27:36 By Eileen M
• I am not liking this new message board and I am not sure if anyone is still on this. I was just wondering if there is any progress on XLRS research. Any updates would be appreciated.
  
  My sons are still using the Trusopt, it has been two years. There vision improved quite a bit, but has now leveled off. I also do not use the drops as consistently as before. My 13yo's vision is around 20/30 up until two years ago, it had been 20/60. He plays hockey and baseball. My 16 yo is at 20/50 - 20/60, where his vision was 20/80 - 20/100 up until two years ago. He just recently got his learner's permit, he qualified for a daylight license (have yet to take him on the road), but I do not believe this would have been possible had it not been for the Trusopt.
  
  Thanks,
  eileen
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• Son with cxlr
• Posted: 2009-05-26 11:22:09 By Jen C
• Just trying to contact some people who know about cxlr. My son is 5 years old with this disease. Please message back if you want to chat.
  
  Thanks,
  
  Jenny
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• Posted: 2009-05-15 14:41:05 By racer x
• w
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• My son has just been diagnosed with XLRS
• Posted: 2009-04-03 13:04:18 By Michele B
• My five-year-old son has just been diagnosed with XLRS. I have been reading most of the posts listed here and am trying to come up with some treatment options for him. We have a retina specialist and an eye doctor for my son, both of whom have experience with XLRS. He is taking dorzolamide drops in his left eye twice a day. I have read about Trusopt and Azopt drops in other messages and will ask the doctors about those drops. How are people handling sports? My son is just starting T-Ball and must wear a helmet with a face mask. Are other people using safety goggles for their sons? Is there such a thing as a retina transplant? Any information or advice would be appreciated.
  
  Thank you, Michele
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• test
• Posted: 2009-01-25 18:38:07 By Niki a
• 
  
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• microsystem acupuncture
• Posted: 2008-10-02 14:23:17 By steve m
• has anyone with retinoschisis tried microsystem acupuncture yet? its shown very promising results. im currently on the trusopt drops and dont seem to be noticing an improvement so will be looking into this further
  
  thanks
  
  steve
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• visions conference update
• Posted: 2008-09-28 17:14:44 By Sarah E
• I had posted this message once before, but it had been deleted as part of the message board problems that are going on. Here it goes again...
  
  Hello All,
  
  I am a mother of two boys, ages 3 and 6, with retinoschisis. I attended the Foundation Fighting Blindness’ Visions Conference in D.C. a few weeks ago and wanted to share some of the information I learned:
  
  *A big focus of the conference was the very promising results from the Leber congenital amaurosis gene therapy study. It was mentioned a few times at the conference that retinoschisis is next in line for human gene therapy studies. (We’ve already had successful mouse gene therapy studies.)
  
  *Two labs are “competing” to be the first to find a treatment for retinoschisis— Sieving at the NEI/NIH and Molday at the University of British Columbia. The competition is fueling the drive to find retinoschisis treatment.
  
  *It is important to get genetic testing. Right now the NEI/NIH is doing the retinoschisis genetic study. The primary goal of the study is to look for a genotype/phenotype correlation but there are other benefits from participating in the study:
  #1 Researchers know we exist. An orphan disease is one that affects less than 200,000 persons in the United States. Retinoschisis affects less than 20,000. With such low numbers, researchers may not have as much of a drive to study our disease. How do researchers find out about us? From studies like the NEI/NIH genetic study.
  #2 Another benefit is that we are eligible for future studies. A researcher is likely going to want to have your disease genetically verified to include you in a treatment study.
  # 3 Researchers will be able to contact you to include you in clinical trials. When you get genetic testing you can agree to have your information put in a database that researchers can call upon to find study candidates.
  
  I encourage you to attend next year’s Visions Conference. I do a lot of research on my own, but was still blown away by all that I learned at the conference. I had the opportunity to talk directly with the top researchers in the U.S. For example, we had tried the dorzolamide drops with my older son, with our doctor closely following him with OCT. We never saw any benefits so we gave up. I was able to consult directly with Dr. Gerald Fishman (he did the first dorzolamide study showing benefits). Dr. Fishman gave me some ideas and is working up a model of our specific genetic defect (we have had our genetic testing done) to see if dorzolamide would be effective.
  
  We can gain so much from attending the conference; plus, if there is more and more of us affected by retinoschisis attending, the conference agenda may include more retinoschisis-specific topics and may help drive the FFB’s funding of retinoschisis research.
  
  I have started a website for retinoschisis: fightRS.org. I am just getting started on this project (and still learning the basics of web design). The retinoschisis website links back to the FFB website frequently because the FFB is such an important resource. Hopefully the retinoschisis website will be an additional resource for information. Please check out the website. I welcome input, feedback, help, etc.
  
  Thanks,
  Sarah E.
  
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• Why do difficult???
• Posted: 2008-09-12 18:35:31 By Michael P
• To All,
  
  At this time-IMHO-the new message board is experiencing significant hick-ups. I have sent email that have been unanswered. Difficulties include missing posts, many of which go back some years. Difficulties signing in and when signing in the system takes you back to the home page. Replies and posts that disappear with a strange error message that may be the result of a time-out.
  
  Sorry to those who should have replies to their messages. I hope FFB is respond and fix this site. Please ask for feedback.
  
  MikeP
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• test
• Posted: 2008-09-12 02:38:51 By racer x
• test post
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• Disappearing messages
• Posted: 2008-09-11 17:38:30 By Janelle B
• FFB, Why are there posts disappearing from this website? I posted a question and there were about 4-5 threads and now they are all gone. This is very frustrating especially if you are searching this site and looking for any advice we can get. As noted elsewhere on this site, Retinoschisis is rare and it would be nice if the replies would remain on this website so they can benefit all of us.
  
  Thank you,
  
  Janelle
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• 6 yr old son with retinoschisis
• Posted: 2008-08-25 16:07:50 By Janelle B
• I have tried to post previous messages to no avail, but I'll try again. Our son was diagnosed in Feb. with retinoschisis. He is currently seeing about 20/50 to 20/60 with his glasses. He was on Azopt drops for 2 mo. and then taken off of them because they didn't seem to help. 3 mo later the cysts were a little bigger, so he was put back on the drops. I keep hearing about Trupsopt, but not Azopt. We go to Associated Retinal Consultants in Royal Oak and see Dr. Drenser. She said everything is just trial and error. Does anyone have any opinions on all of this? Thanks for the imput,
  
  Janelle
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• Trusopt Drops Update
• Posted: 2008-05-05 19:40:07 By eileen m
• My sons have been on the Trusopt drops for approximately 10 months now. They had their vision checked recently and the results are still promising. Both of them have had about a 3-line improvement in their vision. My older son continues to see around the 20/70 line where he was consistently at 20/100 prior to the drops.
  
  My younger son is currently seeing at the 20/30 line (and was able to read 1 letter at the 20/25 line) where he started out at about 20/60.
  
  Their Dr. is extremely encouraged by this...I still need to schedule the OCT, but we have been very fortunate with the results from the drops.
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• Now They See
• Posted: 2008-04-27 20:56:16 By Mike P
• Check out the Breaking New article on the Foundation Fighting Blindness home page. This is good news.
  
  Mike
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• Kellogg Eye Center Retinoschisi Web Site
• Posted: 2008-04-19 19:36:23 By Mike P
• http://www.kellogg.umich.edu/patientcare/conditions/retinoschisis.html
  
  If you have some free time to read about retinoschisis try the above link to the University of Michigan Kellogg Eye Center.
  
  Mike
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• The OCT as I know it.
• Posted: 2008-03-28 21:30:54 By Mike P
• I want to explain my very basic understanding of the OCT (Optical Coherence Tomography) retina scan that is being used to measure the retina cysts and monitor the effectiveness of our Trusopt experiment. Some of the information explaining the basics of the OCT is from a pamphlet from Stratus OCT and some is from my experience watching and questioning the OCT tech and my doctor. I also had an experience where the OCT was thought to indicate an increase in the size of the retina cysts but upon investigation of the previous OCT, the magnifications were different and the result turned out to be a significant improvement. Here you go and please let me know your experience or knowledge of the OCT. Mike
  
  The OCT retina exam is a relatively new noninvasive technology that uses light scans to produce cross-sectional images of the retina. The company that makes and markets the technology claims that pictures are 10X sharper than an MRI or Ultrasound. The pictures detail the various layers of the retina and reveal splits, holes, tears or cysts between or through the retina as well as other diseases.
  
  From experience, there are some user settings that can produce variations in the final scans or in comparisons of multiple scans. The first and easiest to understand has to do with the magnification level. When comparing two scans the tech or doctor needs to make sure that the magnification is the same or adjust the measurements for an apple to apple comparison. A scan that is magnified 25x should be compared to a scan that is also magnified 25x (I just made those magnifications levels up). It is a good thing to make sure that the tech verifies the magnification.
  
  Second, the scan is a cross-section of the eye and may only be a good comparison to a previous scan of the same cross-section. The techs that have completed the OCT on my retina have been able to show me the plot graph of my eye where the scans were taken. I am fairly confident that the scans were of the same section.
  
  Clearly, the OCT is an important test in evaluating, monitoring and considering treatment.
  
  I hope this little discussion helps in understanding the OCT and some of the results that are reported in follow up visits to the Retina Specialist.
  
  All the best and please continue to update us on your life stories.
  
  Mike
  
  
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• hemorrhage in 6 year old: need advice
• Posted: 2008-03-20 12:47:09 By N V
• Hi All,
  One of my good friends here who has a 6 year old with XLRS got hit by a swing 3 days ago. Yesterday night he complained of no vision in the left eye. Today a local doctor here has confirmed hemorrhage. Based on a success story shared in this board I asked her to put the kid on bed rest till ti clears out spontaneously, the doctor told her the same thing too.
  
  Do any of you have any better easier advice that can prevent a detachment?
  
  Thanks,
  NV
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:27:13 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• new diagnosis of 4 yr old-I'm confused
• Posted: 2008-02-07 20:37:21 By Tab V
• I hope someone on here can please help me to possibly understand what is going on with my son. In May 2006 he was diagnosed with optic nerve hypoplasia, based on him being unable to see at night. In December 2007 took him to a different doctor and that dr said optic nerves look fine, but saw something else and refered us to a retina specialist. 2 wks later they did an ERG and told us it was retinitis pigmentosa (RP), and refered us to a genetics retina specialist. We saw him on 5 Feb 08 and he told us that the ERG was shoddy, his optic nerves look fine, and that he "thinks" that what he has is x-linked juv. retinoschisis, but wants to due the genetic testing and that he isn't actually nightblind (although he did no testing to see what level the light needs to be for him to see) What am I supposed to do after seeing 4 different doctors and all saying something different? I don't know if he possibly has all of them or even if that is possible or if I should trust anyone at this point. There is no one in my family at all that has any of these conditions. Any advice anyone has would be appreciated.
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• questions to parents: cataract
• Posted: 2008-01-14 22:12:45 By N V
• My 21 month old son is developing sub capsular cataract in his right eye. The doctor also mentioned that there was silicon oil in vitreous of the right eye. My son has undergone surgeries in both eyes for bullous schisis and retinal detachment at 4 months of age.
  
  Has anyone with Kids of similar XLRS severity had these problems, heard these terms. What did you do for this and what was the outcome?
  Thank you for your time.
  Nara
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• drops
• Posted: 2008-01-14 16:28:22 By Maria Joao J
• Hi!
  
  I've start visiting this page two years ago, when my baby son was diagnosed with RSXL.
  My message today comes with a smile and a worry: my 3 yrs od son will start with dorzolamide drops... It's a Hope, but will it work?
  Just one more to join the group. We'll keep in touch.
  
  MJ
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• Update on Michael
• Posted: 2008-01-02 16:58:40 By Sherry C
• Hi Mike,
  
  Michael went for his follow-up visit on 8/24/07. At that time, his eye chart reading was 20/30 again in both eyes and his OCT reading was down slightly in one eye and the same in the other. Before the appointment, I had contacted Dr. Fishman in Chicago and had explained my concern about the worsening OCT readings since being on the Trusopt drops. He felt the change in the OCT readings was not significant and recommended that we resume the drops which we did following the 8/24/07 appointment. He has been on them 3x a day ever since then. His last visit on 10/5/07 again showed some improvement on the OCT test.
  Thanks for your concern, Sherry
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• retinoschisis
• Posted: 2007-12-30 11:53:51 By Francesco S
• Hi, i write from Italy, my son Martino, one year, is affected to retinoschisis.
  In Italy the doctors tell me that nothing is possible for cure this disease.
  I search news.
  I speak with the doctors ebout Dorzolamide but they tell me that it's too short time and not much people try this cure.
  They recommend only frequent check.
  What do you think?
  Sorry for my english
  
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• new to msg board
• Posted: 2007-12-13 01:37:46 By kevin r
• Hello, I am a 21 year old college student living with XLRS. For many years I've tried to ignore my vision problems and wouldn't even research it in case I might find out the worst that could happen. However I do go to regular exams and have 20/40 in my left eye and 20/60 in my right eye. I'm curious about the results with those eye drops mentioned before. What are the long term risks and possible benefits? Thanks for feedback
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• dorzolomide (trusopt) From: **** T (8/07)
• Posted: 2007-12-02 09:18:59 By NULL M
• Re: dorzolomide (trusopt) 8/21/2007 2:43:59 PM
  From: **** T
  
  Hi
  
  I´d recommend you to show for example this study (http://www.retinajournal.com/pt/re/retina/abstract.00006982-200609000-00005.htm;jsessionid=GL1Php2yVsX8RVcFcDblQfyPhr6hj1dHNfKnWKZ49ZLL301C20y1!-362743511!181195628!8091!-1)
  to your eye doctor and talk about your options!
  
  JT
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• XLRS research study (1/06)
• Posted: 2007-12-02 09:13:36 By Mike P
• 1/3/06 News: The Foundation Fighting Blindness is providing a kit upon request for those interested in genetic testing; click on the link for their web article and get your free information packet.
  
  Meira at the NEI was most gracious in providing the necessary information to participate in the XLRS research study. Please take advantage and contact her to begin the process. Thanks for your assistance and pass on the information to those you know with XLRS.
  
  Individuals who are interested in participating need only contact me (Meira Rina Meltzer) either through email or through phone. Long distance participation requires: 1) a phone conversation with me to discuss the study as well as family history and genetics, 2) a release of medical records documenting XLRS diagnosis, and 3) a blood sample so we can test for XLRS1 mutations.
  
  Your readers can learn more about the study at
  
  http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_03-EI-0033.html
  @retinoschisis
  
  Also, this study is fully funded by the National Institutes of Health,
  
  National Eye Institute.
  Meira Rina Meltzer, MA, MS
  Certified Genetic Counselor
  National Eye Institute
  phone: 301-402-4175
  fax: 301-402-1214
  email: meltzerm@nei.nih.gov
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• diagnosis at birth through cord blood?
• Posted: 2007-11-29 20:22:48 By A F
• hello there,
  I am a carrier of what I'm sure is XLJR (previously they thought it was stargardts), my Dad has it and is registered blind, although does have some vision. I made a decision to carry on with my pregnancy, even tho we were offered genetic testing that would have happened at about wk 16, to test the baby's blood for the same gene change as my dad which would then leave our options "open". I decided i didnt want to make the decision and my dad has a good life despite being frustrated at times and I decided I would go ahead regardless (my husband was not as convinced, but still he hasn't grown up with a family member with this problem and his mother suggested aborting a baby if we found out he had the gene - which was out of the question for me, i'm not religious, but I dont see XLJR as a reason not to be born!). (I still don't know the gender, but will find out soon). What the other option was, was to test the cord blood at birth and look for the changed gene then, then they said we will know whether he has a change of developing the problem or not later in life. Did anyone else go through this?
  I see that it has been hard for parents of children with the problem, I do wonder sometimes if I made the right choice, but for me it was an ethical decision, I just hope the children never ask why we had them knowing they might have a visual impairment....
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• Trusopt updat
• Posted: 2007-11-29 18:26:21 By Mike P
• Hi to All,
  
  Todays visit to the Retina doctor brought very positive results on the Trusopt trial. In the works of my doctor "the cysts are virtually gone" The vision acuity did not improve, but I was not expecting it to improve. I plan to visit the Low Vision Specialist in January for an eye test and new lens prescription. I do believe their will be some improvement next year.
  
  For those of you trying Trusopt, I was on the drops 2x per day for about one year. This past April the cysts were visible on the OCT but smaller than the first OCT. So, my 49 year old eyes took a year to respond to the drug.
  
  Mike
  
  
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• update/my 17 year old
• Posted: 2007-11-26 20:06:41 By Diane B
• Before he started the drops, the doctor did an OCT. Then he started the TruSopt drops - twice daily in one eye only [my son was quite reluctant about the whole thing, but willing to try one eye only.] So here's the puzzling part - the results and my son's reaction. We went back after 30 days, and his vision had improved by three lines in the right eye [fewer cysts, but worse vision than his left eye] since the last visit. There was a one line improvement in his "good" eye - the one with more cysts, and no drops! BUT the OCT results showed basically no change [the number actually was a little worse but the doctor dismissed that as testing variance and wasn't worried.] So ... the conclusion was clinically, the drops didn't help at all, functionally they didn't help at all [my son says he sees no different than before,] but the eye chart shows a clear difference. Basically the bottom line is functionality ... and since my son sees no differently, he opted out of future drops. NOW, we go back in Feb, and if his vision has worsened as a result of being off the drops, he'll consider going back on them. His vision measured 20/50 and 20/80.
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• Azopt Drops
• Posted: 2007-11-11 13:47:22 By Laura G
• Hello,
  I just wanted to give an update on my son.
  He was diagnosed over the summer and we've since been seeing a retinal specialist and a pediatric ophthalmologist in San Francisco who are both very familar with Retinoschisis. We just got back from our last SF trip on 11/8 where my son had his first OCT and we learned that he does have retinal splitting and cycts present in both eyes. His vision as best we could tell is about 20/80 in both eyes a little better in his right eye but not much. He just turned 4 and the Dr. said we will get a more accurate visual accuity as he gets older.
  
  His Dr.'s agreed he would be a good canidate to try the glacoma drops, being that he is still so young and thats where they are seeing the best results...
  
  As of 11/9 we have been using a drop called Azopt it's a brinzolamide ophthalmic suspension 1%. I'm giving it to my son twice a day, and from what we were told this has been giving the same results as Trusopt, but with less stinging and burning when applied.
  My sons eyes have always been very sensitive and he has never been okay with recieving eye drops. We are only on day 3 of using the Azopt but not once has my son complained of stinging, burning or any discomfort when getting the drops. I have noticed that for a hour or so after application his vision does seem to be blurred (this is listed as a side effect) but it doesn't seen to last long, and he's fine when the time comes to get the next dosage.
  
  We go back in 3 months to do another OCT.
  I will be sure to post an update on the results.
  Just wanted to put the word out there about Azopt, and it's seemingly painfree way.
  
  Laura
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• 4 Year Old with XLJR and Macular Hole
• Posted: 2007-10-13 19:37:04 By Jessica M
• 4 Year Old with Retinoschisis and Macular Hole 10/13/2007 7:36:05 PM
  From: Jessica M
  
  Last January, just prior to his 4 year old birthday, our son was diagnosed with Juvenile Retinoschisis and a macular hole in one eye. We had never heard of the disease, but have now concluded that my grandfather must have been affected (he had horrible vision) and it was carried down through my mother. From perhaps age 6 months, I suspected there was something not quite right with my son's vision, but only because every once in a while he would bring a book very close to his face. At age two, we took him to Children's Hospital in Boston, but nothing was detected. When I inquired again at about age 3 1/2, our doctor suggested we take him to a wonderful Pediatric Ophthalmologist at Newton Wellesley Hospital, who suspected Retinoschisis and sent us to a Retina specialist in Boston. He confirmed the diagnosis, and the abnormalities in his left eye turned out to be the macular hole. He has been seen every 3 months, specifically in hopes the hole would spontaneously close, however, since it has remained unchanged, the doctor (and several other doctors we have consulted with in Boston and France) have recommended performing surgery with a silicone oil to attempt to plug the hole and hopefully restore vision in that eye. His other eye is 20/40 and although he apparently has no central vision in the one eye, he does amazingly well, and you would never know he had any issue. It has been overwhelming since the diagnosis, but we have come to the conclusion that it is not terminal and could have been much worse, and that he can live a wonderful life as long as we help him to become the most confident, independent person he can be.
  
  What we have struggled most with is balancing risk with enjoyment. Our doctor and other doctors we have seen have been quite clear that he should not participate in contact sports, or for that matter participate on trampolines or bouncy structures. Since he isn't in kindergarten yet, we haven't had to deal with Physical Education, but I would WELCOME information on how others have dealt with the no contact sport recommendation and every day play in a school setting. Just before his diagnosis I promised myself to stop worrying so much about our children so much (we also have 2 daughters), and to "let them play", and with the diagnosis, found myself right back in the 24 hour/day worry mode!
  
  Any information regarding macular holes would also be appreciated. Thanks so much,
  
  Jessica from MA
  
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