"Do all my friends and all the kids in the world be able to see with their two eyes?" my little boy innocently asked me.
About a week earlier he had asked me if I hadn't been able to see with one eye when I was a little girl.
Also recently, he asked "How long do I have to patch? Until I can see with this eye?"
He seems to be trying to figure out exactly what the situation is with his eyes. For all the above questions, I answered honestly, carefully, but I tried to be casual. "A lot of kids see with two eyes, but some kids are like you, with one eye that gives them trouble." He recently met my uncle, who is blind, so I reminded him that some people, like "Tio Gilbert" (Tio is "Uncle" in Spanish) cannot see at all. I also explained that some people are deaf, and some people cannot walk and may use a wheelchair, etc.
As for the question of how long he would have to patch, I said maybe til he was 7 years old or so, but that Dr. T would tell us when it was time to stop. I wonder if I should have been more honest with him about that. I mean, his vision might not improve all that much. But you never know. I guess we just gotta wait and see. But I do wonder what I should have said. I guess there will be other opportunities to talk with him as he wonders and asks.
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3 comments:
Hi, my name is Josh and I was diagnosed with Coats' when I was about two years old. I just found your blog this afternoon, through the link on coatsdisease.net. Thank you for sharing your story. I have infinite empathy for your son and I can only imagine what it's like to go through what you're experiencing as a parent. By the time I was referred to an optho my central vision was already destroyed. I retained a little bit of peripheral, about as much if you hold two fingers directly in front of your eye and look directly into them. I could still see some light and movement around the perimeter, but not much. I never patched, and after reading your blog I realize now that I don't know why. Perhaps my doc thought the damage was too extensive, I don't know. But I'm going to ask him (I still see the same optho twenty-eight years later!) When I was in high school I started getting bleeders again and lost that little bit of remaining vision in my right eye. Since then my eye has gone into severe decay, a condition they call pthisis bulbi (where do they come up with these words?). This happens when (as I understand it) all light sensitivity is lost and the intraocular pressure drops. The eyeball becomes very small and unsightly. I'm considering having an enucleation and an artificial eye made soon. I feel that if I'd seen my doc more regularly (say every six monts instead of annually) and refrained from doing stupid and harmful things like operating a chainsaw (vibrations = NOT GOOD!!) that I would never have lost my peripheral vision. Protecting that remaining vision is so important!
Reading your blog has been very emotional for me--it's brought back lots of memories and feelings I didn't know I still had. Thanks again, and God bless you and your family.
Hi Josh - thanks for posting your story. Did you ever have surgery? Also, the description you gave about holding two fingers in front of your eye is really helpful. I wonder what Joey can see, but at this age, he cant really explain too well. I will ahve to make sure I patrol the glasses very well. I am already prepared for bribery or whatever it takes! :) I never thought about the chainsaw thing (vibrations), but i will also keep that in mind as he grows. Thanks again, and let me knwo what treatments you did have over the years. Thanks!
I had an exam under anesthesia, then cryo to freeze the bleeding vessels when I was little (~2-3 years old). The cryo had to be put off at least once because I caught a cold or the flu. I had a strabismus surgery when I was a sophomore in high school to correct the way my bad eye drifted in toward my nose. In retrospect, I think that the trauma of the surgery may have caused or contributed to the new bleeding that started about that time and eventually wiped out all remaining vision in my right eye. I don't second guess the decision to have the so-called "cosmetic" surgery, however. It's hard to understand how difficult it can be socially and psychologically to walk through life with a badly misaligned eye unless you've experienced it for yourself. I think the natural reaction of parents and family is to discourage such "cosmetic" procedures if they are perceived to be at all dangerous. The truth is that no one in the family really understands the desire to appear normal the way the affected child understands it.
Also: I don't recall the medical name for the condition, but there is a rare syndrome where the patient's own immune system starts to attack the sick eye (recognizing it as a foreign body, apparently). When this happens, it can also attack the seeing eye. If your doc hasn't told you about this possibility, you may want to ask.
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