A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS



Persistent Hyperplastic Primary Vitreous


also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".

traciereinikka@hotmail.com

Perth, Western Australia







Monday, May 31, 2010

Head tilting

Another thing we have to "contend" with is Joel's head tilt. Try this:

Look at an object or room with both eyes open and head perfectly straight.
Take note of how much you can see.

Now close or cover your left eye and look at the same object with your head straight.
Take note of how much you can see.
Now tilt your head to the right and take note of how much you can see. It's a fair bit more than you can see with your head straight.

Babies learn to do this from an early age when they have a problem with their vision. It soon becomes a habit. Because they can see more of a room or object by tilting their head, that's what they do.

Joel's head always tilts. When he's laying down he tilts it and sometimes when he is sitting up he will tilt it. I have no idea whether or not he will grow out of it or if it will lessen the more he can see.

Another unknown.

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