
Originally Posted by
Kate H
Oliver is much the same as Charlie - he does have a small syrinx but that seems to cause no problems. His very dilated ventricles (3 times the normal size) cause headaches and light phobia due to damage to or interference with the mechanism of his pupils - all symptoms caused by his CM.
Karen - does Charlie wear a sunhat when he squints in the sun? Charlie has a poplin baseball cap with a long brim and it really helps when he's sitting around in bright light (even sittng in shade but looking out at light) - when he's walking or running around his nose is always on the floor so his own eyelids protect him. He also has some doggles but so far hasn't needed to wear them.
Best of luck with the MRI,
Kate, Oliver and Aled
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