Eye patching helps some Dravet infants with light sensitivity. They alternated but I’m still wearing a homemade patch over the right eye when reading at home and use monovision at work for over a year. I wore the distance contact on the left eye until the light sensitivity came back in 4 to 5 months. With the current Rx, I’m wearing the distance contact on the right and the near contact on the left. Since I do very little close up reading/tasks at work I’m symptomatic free of torticollis 99% to 100% most nights now. I also discovered wearing monovision and the eye patch only over one eye changed my vision slightly with the next Rx eliminating most of the light sensitivity. Dravet syndrome mimics dystonia/blepharospasm in some areas. Tyrone
--------------------------------------------------------------
A 2-year-old Caucasian male presented with a history of nystagmoid eye movements. He also had a history of seizures that were poorly controlled with medications. The parents felt the seizures were exacerbated by exposure to light as they were worse on waking up from a nap.
Around 15 to 18 months of age, the patient began regressing developmentally. Although he had been walking previously, he resorted back to crawling and could no longer verbally communicate with his parents with well-formed words. His receptive language skills surpassed those of expressive language. The parents continued to notice that the seizures appeared to be triggered by exposure to bright light and began to keep him in totally dark environments and made him wear sunglasses constantly.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646330/
---------------------------------------------------------------
In previous blogs, I have briefly mentioned patching my daughter’s eyes. Sure, many children have to wear an eye patch for a time to perhaps correct a lazy eye or for some other issue. But Sydney’s eye patching is serving a very special and unusual purpose. It is stopping thousands of daily seizures.
As mentioned in the blog about Sydney’s many triggers, light sensitivity is a big issue for her. As shown in this brief video (Sydney’s Hard Cluster), Sydney’s cluster seizures that she experiences daily consist of what are called eye myoclonics, atypical absence, and head drops. During really bad clusters, she will experience this combo every 2 to 5 seconds. These clusters might last about 45 minutes or they may go on for most of the day. Some days, the only breaks Sydney seemed to have were when she was napping or at bedtime. Once she woke up, the clusters would begin again within 10-15 minutes.
We didn’t realize for a time that Sydney had developed a sensitivity to light. I believe only 40% of Dravet cases experience photosensitivity as a trigger so we aware there was a possibility that she might develop it. Once we realized it though, we took every step we could think of to try to limit as much light as possible from bothering Sydney.
http://www.sydneyagainstdravet.org/2012/02/19/eye-patching-a-new-treatment-for-seizures/
---------------------------------------------------------------
Due partially to Sydney’s poor vision with objects close to her, plus the wearing of the eye patch on one eye to control the light induced seizures, her depth perception is pretty off. She hesitates and struggles anytime she comes to a division of sort.
http://www.sydneyagainstdravet.org/2012/03/21/success-at-the-playground/
https://www.facebook.com/Sydney-Against-Dravet-218081071537223/timeline/
