I have a seven-year-old daughter with CdLS. She showed signs of pink eye about two months ago. Her doctor prescribed an antibiotic. But two weeks later the problem was still there. Then one night when I was looking at her eyes I noticed what looked like a tiny round dent in the middle of her pupil. I thought something had poked her in the eye. The doctor said it could be an infection, so he sent us to an ophthalmologist who said the same thing. He also asked if her eyes stayed open when she sleeps. They do. So he thought it could be caused from exposure and possibly eye lashes that he noticed were rubbing on her eye. So he sent us to a corneal specialist who confirmed everything. We started treating her with two antibiotic ointments. We did this for 1 month and as it wasn’t completely healing they decided to surgically remove some eyelashes. They are still prescribing the antibiotics but the “dent” is still there. They say they feel it has healed as much as it probably will but are very vague as to any conclusion. They are trying to come up with a way to make her eyes close all the way but say surgery for that on small children isn’t always successful so are very hesitant. I’m starting to worry that she will lose some vision. (They have diagnosed her with Blepharitis, which she has always had, but this damage to her cornea is new and very scary).
Chronic “pink eye”/conjunctivitis in children with CdLS is most often due to blepharitis: a suboptimal flow of the 20-30 glands normally present in each eyelid. This could certainly cause a number of cornea problems and the treatment is usually baby shampoo eyelash scrubs.
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