Jacobs Parents
208 posts
May 20, 2009
4:41 PM
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Jerry,
I am so sorry to hear about Jerry's right eye. Bilateral Coats' Disease is almost always asymmetrical, meaning one eye is affected much less than the other. Jerry should be followed very closely, at regular intervals, to make sure that his vision stays OK. As with any condition, there are variations in severity, so I don't want to sugar coat it. Try doing a Google Search on "bilateral Coats' Disease". and you will be able to read some cases at both ends of the spectrum.
Jerry should wear some form of polycarbonate lenses at all times, and he should have RecSpecs or some type of protective goggles for sports or while he is playing with his buddies. You should be able to find some pretty cool looking ones, that may help you get Jerry to wear them. You can get tinted ones for summer, or if you suffer through 8 months of snow like we do in upstate New York. If you haven't done so already, you should tell the school nurse, the gym teachers, and his regular teachers. You might want to show him the Google Map on our website, to show him that he is not alone. Our son felt isolated until we showed him the map, and let him click on a few of the placeholders. If he wants to post here, he can do that, too. Most of all, try to let him be a kid. Most activities will be fine as long as he is protected. Just stay away from contact sports like football or hockey or boxing, etc.
Take care of yourself,
Dave
Last Edited on 20-May-2009 4:49 PM
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