Helena is a bit complex (!)
For starters, she has a frontal lobe abnormality which was picked up on MRI brain scan. There is also some faint weirdness towards the back of the brain (where optical processing happens) though it is less obvious and you have to be really looking for it to pick it up. There may be other problems developing, we're due another MRI scan to find out.
She has Galactosaemia - a genetic condition probably unrelated to the brain abnormality but which can, in itself, cause widespread low-level neurological damage.
So, those are our two "causes", so she will have a number of things your LO is very unlikely to have, don't read anything into the following:
Vision-related:
- Saccadic Initiation Failure: an inability to make sudden "glancing" movements with the eyes, for instance if something suddenly appears to one side of you. She can do this to the left, not to the right. May affect reading in later life. Was quite severe at about 6 months, now much improved.
- Poor recognition of right field: eyes working OK on this side but not really registering objects on her right. Again, has improved somewhat (about 15% in the last 6 months) and may continue to improve. But rhs still less "significant" to her than lhs.
- Reduced visual acuity: can't distinguish very small objects - again eyes fine in this regard but the brain isn't picking up tiny things - not a major problem but won't ever be able to read the very bottom of the optician's chart no matter how good her glasses are.
- physical eye problem: has mild cataracts which are tending to make one eye short-sighted. We're patching for this and again it's improving but long-term may need glasses.
I think that's all the visual stuff. Some may be related to DVM if not caused by it - eg if she had some problem on RHS anyway, it didn't get "exercise" for the first couple of months due to DVM and so was worse than it might have been though now improving.
Non-visual stuff: Global Developmental Delay (she's 21 months but developmentally about 8 months), ASD, Severe drug-resistant Epilepsy. The ASD and the Epilepsy are probably due to the frontal lobe abnormality, the GDD is probably caused (or at least is made worse) by the Epilepsy.
Like I said, don't expect any of the above to happen to your baby - Helena's a bit of an odd case. I did read up on DVM when Helena first got it and I know in a lot of cases it's just one of those things and clears up on its own (as it did with Helena despite her other problems). Good luck for your NHS appointment - where are you going? We are with a Mr Nischal at Great Ormond Street - the clinic is an absolute nightmare logisitically, but he is very good.