Hi, am back (just been to check out our new house - very exciting as we've been in a rented flat for ages!
DD's story is as follows. At 7 weeks I took dd to her 6 week check & raised concerns that her eyes didn't appear to be tracking or focusing. She was also very unresponsive and uninterested in the world around her, & seemed to have NO concept of day or night. GP seemed not bothered, so I took her home again thinking things would be OK. I took her back the following week as things were definitely not OK, she was still not tracking/focusing. We then got referred to Brums' CH, where we underwent EEGs, MRI, VEPs, bloods etc. Turns out she also has partial agenesis of the corpus callosum (the sandwich layer between the two brain hemispheres didn't grow properly), although they think that this is fairly mild.
Fast forward to 5.5 mths. She's very chirpy, and now tracks objects reasonably well. She still has few fine motor skills, not too sure whether this is related to the delay in getting vision or her hypotonia/ poss. learning difficulties (these would be related to her corpus callosum problem, not DVM). However, it's early days, as she didn't have any vision until 3.5 months. I can say that things have improved greatly for her over the past couple of months, and although very behind she is blossoming. We're still waiting to see whether there's any long term visual impairment - but I am very buoyed (??) by the fact that she has some vision now.
From a diagnosis perspecive I found it quite tough as I searched desperately for someone else who had had a child who had DVM, and could find no-one.
A family friend who's a paed bought us this:
see this
which I found helpful. We are also getting a teacher for the visually impaired to come out to dd this week. We had to wait 4 months to see her, so maybe worth asking about this if it hasn't been offered already.
HTH