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This one is about: Sticklers/Retina Alert


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Sticklers/Retina Alert

My child (PRS with Sticklers - age 20 months) will be seeing a vitreo-retinal specialist soon. It is good that this doctor does have Stickler experience, so I am hoping that she can give me some ideas on any home monitoring I can do. There are eye doctors just for children. However, I don't know of any RETINA doctors just for kids. It is rare that children have retina problems, so I am sure the supply is limited if in fact even existent.

Basically this is what happens: If a tear or hole has occurred she would see bright flashes of light. Or she might see 1000's of black dots. If the retina has actually detached then she would see a black curtain coming over her vision.

The best layman's terms that I have been told is that the retina is attached to the eyeball with vitreous gel. It is like wall paper and adhesive. The retina being the wall paper and the vitreous gel being the adhesive. In a stickler person the retina is very weak and the gel becomes watery and will not hold the retina down. Also, because the eyeball is so large from the myopia, the retina which is normal size is having to stretch to cover the eyeball. A weak retina being stretched and stressed and trying to be held down by dysfunctional gel puts Stickler eyes at a very high risk for problems.

If you think about a wall with wallpaper and taking a knife and cutting a slit in the wall paper it would form a little slit. This would be equal to a retina tear or hole. Before long the wallpaper would get air, dirt, moisture under it and the wallpaper would begin to peel away from the wall. This would be equal to an actual retina detachment.

THE REPAIR: If a retina only has the tear or the hole then a laser can be used to seal the edges. Almost like gluing a door shut. However, most tears of the retina begin to peel away from the eye within 24 hours. If the "peeling" occurs (the detachment) then a major surgery is required, but one that can restore the vision to some extent. The main surgery that they use is called a Sclera buckle. It compares to wrapping a piece of plastic wrap around the eye, thereby holding the retina up next to the eyeball. Almost like a rubber band.

When my child is older and better able to communicate, she will be able to tell me if she is experiencing any symptoms of a tear, hole, or detachment, and believe me, we will be at the hospital immediately. The hard part is that at her age, she wouldn't understand what was happening and wouldn't know what or how to tell me. The 24 hour window isn't really even a reality at this time. A detachment can start off very slowly and slowly continue to peel away, or it can happen very severely all at once.


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