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• Son just diagnosed
• Posted: 2011-07-20 14:02:12 By Kathy N
• My 8 year old son was just diagnosed with CXLR yesterday. I am freaking out a little and not sure what to expect, what if any steps we should be taking, etc. Any guidance anyone can offer would be greatly appreciated...

• just diagnosed
• Posted: 2011-07-27 17:51:29 By Michael P
• Hi, your son is not different because you now have a diagnosis. Like most of us, he should do fine for the rest of his life. There is a lot of information on this board so spend some time and read the postings. I am sure that you will have most of your questions answered. If after reading, please repost with specific questions.
  
  MikeP

• CXLRS ...be optimistic :)
• Posted: 2011-08-15 08:09:17 By Paul S
• Hi My son (aged 5) was diagnosed 18 months ago with CXLRS - it was a shock, so understand what you are going through. Fortunately we stumbled upon the condition by chance, and at present he is showing a small split in one of his retinal layers - his central and peripheral eye sight is fine at present. we undertake 2 consultations and examinations each year.
  
  It is the not knowing how severe or not the condition can get that is most daunting. There is lots of research going on that helps me remain optimistic that one day there will be treatment or indeed a cure!
  
  Make sue you have a very good consultant and that your son has regular eye checks by the consultant.
  
  ...you are not alone :)