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daughter Abbie is nine years and has septo optic dysplasia (sometimes known
as deMorsier's syndrome). She is blind in her right eye (she actually has
optic nerve hypoplasia on the right side) and is missing the septum pellucidum
(a mid-brain structure).
She has significant learning disabilities, problems with visual/motor (eye hand) coordination, fine motor difficulties (including not knowing where her body is in space), and social skill problems (not responding to social cues). She can't tie her shoes, start zippers, or button buttons. She is blind in her right eye which adds to her motor skill issues. She has had seizures and is on tegretol (which appears to frequently cause drowsiness and lethargy). The tegretol appears to be successful in controlling her seizures. Abbie has great difficulty using her creative skills- she doesn't draw pictures to any extent and has difficulty forming her own creative sentences or stories. However, she is an insatiable reader, reading at or above her grade level (there is some question about her comprehension abilities). The doctor's cannot understand how she can track so well to read. She is also very positive about her disabilities and works hard to accomplish things she can't do. I feel lucky because she doesn't have any growth hormone issues and can see out of one eye. Do you have any idea if any of the other kids involved in our group can see at all? It would be interesting to find out. I know Abbie's case is rare because SOD is usually bilateral.
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This website has been
designed to help empower parents of children with ONH/SOD. All the information
herein is subject to opinion. If you suspect your child may have ONH/SOD
it is recommended that you seek professional advice from a certified pediatric
ophthalmologist. No one individual or company connected with this website
assumes any liability or responsibility |
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