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• My boy
• Posted: 2009-10-20 19:02:00 By Waleska S
• Well my story is the same as a lot of the other messages I have been reading. I cry every time I read each one. My beautiful boy was two when we found out he had retinal schisis. He had the erg done just a few after we foung out and started on the drops soon after that. The drops, we did them for one month. I do have to say my son hated them and at times we would skip them We did tell the retianl doctor that and he came to the conclision that their was no change and he took him off of them. We will try when he is older and he can decide for him self if he see a difference with them. When we found out about our two years old diagnisis when we where pregnet with another boy on the way. He was born in Agust of 08 and when he was six months old when we took his blood and his older brothers blood and sent it to mrs. Metzler at th University of Maryland. Their they did a DNA work up to look for the mutation and my older son came back positive and our baby boy was negative for the mutation. I had made peace with my self and was ready for both my boys to have the same diagnisis but I won't lie I am glad that I only we have only one with the schisis. I still and I guess will always have nightmare about his future. He started prek-3 and the district wanted him to ride the bus I was not ready for that. In the Agust publicaton from the FFB they had info on gene therapy that was sucessful on rats. They were going to start clinical on adults to see it the gene therepy would work on them. I have a question for any one that can help I have a hard time understanding what my son sees. He just turned four and hates his glasses he tells me he gets a head ache and will take them off. Any suggestions or comments?
  
  Johanna

• Posted: 2009-10-26 21:13:43 By Janelle B
• What your son sees would depend on what his vision is. My son sees about 20/40 right now which is great. Our retinal specialist doesn't really give a thorough vision exam, they just do the OCT scan to monitor the size of the cysts. We still see his optometrist to get his vision checked about every 6months.