My son was recently diagnosed with Jeavons syndrome I am completely overwhelmed and I have no idea what to expect. If anyone can share any experience you have had with this condition I would appreciate it so much
Photosensitivity is a big part of Jeavons. Best to block it out with sunglasses, or revert to nighttime activities. Get a good neurologist who understand it. With epileptic people strobe lights usually have the same effect, but due to the random eye movements and eyelid closures even the sun can have the same effect. Does he have eyelid Myoclonia?
Hi-sorry to hear-my son is 8, he was diagnosed 2 years ago with it. He has Jeavons syndrome with absence epilepsy. His Jeavons is triggered by the sun-even on cloudy days, and sometimes indoor lighting. His head deviates up, and he has the fluttering if the eyes. This occurs hundreds of times a day. We’ve tried several medications (5), some had terrible side effects, and none if them helped the eyelid myoclonia. We ordered the Zeiss Z1 specialty lense for glasses but that didn’t help. He now wears a baseball cap and blue tinted sports sunglasses that have a strap, and this works pretty well to block the sun. How old is your son? I took it really hard the 1st year he was diagnosed, still worry but he is a happy kid for the most part-it doesn’t hold him back too much in life yet.
Hey Matthew I’m ok just trying to learn all I can about Jeavons it’s very overwhelming. Can I ask you what your experience has been. I appreciate the hug I needed it