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• Son possibly has X-linked Retinoschisis
• Posted: 2011-11-19 13:47:52 By Lauren T
• Hi, I have a 5 yr old son and were in the VERY beginning stages of Retinoschisis. My son had browns syndrome in his right eye which caused the muscles to constrict his movement. We realized there was an issue when he was about 6 months old. He has VERY poor vision in his right eye and slightly poor vision in his left. At a routine eye check up on Monday the optometrist noticed that his retina is abnormal. We saw a retinal specialist yesterday and he thinks its retinoschisis. He asked if I have any family history of blindness and neither of us thought we did. They want to do an eye exam with him asleep so were waiting to hear when that will take place to get more answers. After talking to family and friends- one of my mothers cousins has a son with x-linked retinoschisis and her other brother has it as well. So apparently it runs in my family and we had no idea. I'm looking into getting genetic testing to confirm I am indeed a carrier. Both of my distant cousins son and brother are now legally blind. So at least I can prepare myself that this is a possibility for my son. I'm looking to talk to people who have gone through this before or who are dealing with the same situation since I can't find a lot online- which is why I joined this site.

• XLRS
• Posted: 2011-11-22 14:16:51 By Leandro C
• Hi. I'm from Brasil, so excuse my english. I have XLRS, and I was diagnosed with the same age as your son. It is hard, but I managed to have a life as normal as anybody else. I am 39 now, married (twice), have one son (age 8), graduate in computer science in a federal university, and I work to the government.
  I use dorzolamide drops every day, and I am waiting for gene therapy to became a reality. As your son is very young, he will have access to more options in treatment that I had. Don´t worry and don´t loose hope.
  XLRS is passed in the X cromossome, and only males have vision problems. My son won´t get it from me, but if I have a daughter, and she have a son, he can have it too.
  Feel free to contact me. Hope I could help.
  

• xlrs
• Posted: 2011-12-02 19:01:10 By Steve L
• My son developed XLRS at the age of 2. He is almost 6. He started Kindergarden this year and we had fear that he would have trouble. He is doing fine and Thank God he has been stable for 18 months. You need to find a retina specialist who is familiar with XLRS. What state do you live in? We see Dr. Khaled Tawansy who is based in Los Angeles.
  

• Go to your family members retina specialist
• Posted: 2012-01-01 14:21:10 By Michael P
• Hi Lauren,
  
  Because XLRS is so rare I would take my son to the Retina Specialist that is taking care of the other relatives. This way you know that the specialist knows about XLRS and you son may not have to go through all the unnecessary exams.
  
  All the best.
  
  MikeP

• Official diagnosis
• Posted: 2012-01-08 14:04:25 By Lauren T
• Thank you so much for all of your responses! My son was officially diagnosed on Friday by a pediatric rentinal specialist Dr. Thomas Lee at Children's hospital of Los Angeles. We will be going back to do an exam under anesthesia to get a base line map of his eye so we can monitor is progression. I would love to find others in our general area who have experience with this or have it themselves. Please email me at laurentrujillo3@gmail.com.

• Official diagnosis
• Posted: 2012-01-08 14:07:16 By Lauren T
• My 5 yr old son was officially diagnosed with XLRS on Friday by Dr Lee at CHLA. We are doing a exam under anesthesia to get a base line map of his eye to monitor progression. If you have this disease or has experience with it, I'd love to meet or talk to people to obtain more info. Please email me at laurentrujillo3@gmail.com. We will be getting our other son (2yrs) checked out within the next 6 weeks.