Hello everyone....I am so glad to see a group for Families with Coats. My son was recently diagnosed with Coats disease in his left eye. We live in such a rural area, that literally no one has ever heard of it...including us. It came as quite a shock to my husband and I since we were expecting just a routine eye exam and then for our son Keanon to just need glasses like every other kid who fails their Kindergarten screening. So we knew it had to be something quite serious when they were sending us two hours away to see a Pediatric optometrist, who had only ever seen one other Coats case in his career...he himself is sending us to another doctor... a retinal specialist that is 3 1/2 hours away and the earliest opening was in March...I think the wait till March may be the death or us. My son at this point is pretty much blind in the eye, we are hoping that they havent caught it to late, but all the research I am doing is pointing to the fact that he may just be blind in the eye...which really isnt necessarily the worst case scenario considering all the other things that his blindness could have been. My husband and I right now are suffering with the woulda, coulda, shouldas...we keep trying to understand how we could miss this, how his doctor could miss this.....even though we realize there may not have been anything we could have done to change the outcome. I just dont know how to feel about this as a mother....I am still adjusting to the shock of the diagnosis.
Posted on: Tue, 27 Jan 2015 12:40:30 +0000
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