Delayed Visual Maturation and a series of my grumbles.

Yesterday Evelyn was diagnosed with Delayed Visual Maturation, before we were waved goodbye without any further information given, other than “sometimes, some babies can just take a while to develop vision”. No information pack, no suggestions for early intervention, nothing. Just, here, your baby has vision problems and we hope that they will have fixed themselves by the time she’s six months old.

I was a bit frustrated.

Obviously I’ll discuss this with Evelyn’s Paediatrician when we see him next week, but in the interim, I was left to Google to find out what exactly DVM is, and what, exactly, I am meant to do now.

Doctors wonder why patients Google things avidly – it might be because in situations like this, the Internet has a little bit more information than anything we were given by a medical professional.

Like, did you know, DMV can also be known as Cortical Visual Impairment (which doesn’t go away)? That in a lot of cases, DVM is considered something that has gone away by 6 months or so of age, unless your child also has other neurological things going on? Like, say, some form of seizure disorder? Or maybe DVM doesn’t actually magically rectify, maybe babies just get better at using their eyes with the limits they have. It depends on which sites you read and whether those sites ACTUALLY work with babies who can’t see properly.

Needless to say, when a diagnosis doesn’t even have it’s own Wiki page, I’m a little hesitant about it being a “real” diagnosis, rather than just one of those things that they tell parents, in order to shut them up, while they hope madly that age and the plasticity of a baby’s brain fixes any problem before anyone gets too stressed.

Of course, I am way too well researched for my own good, especially now, when it comes to Evelyn’s issues. Like, you know, the fact that my baby is having dozens of seizures a day and apparently isn’t developing her vision properly.

You know, that kind of thing.

Not that I’m bitter.

[I’m totally bitter.]

From what I can gather, DVM along with a seizure disorder will probably mean that Evelyn will have some sort of visual processing problem for a while yet, probably her entire life. And yet, no one wants to talk about this kind of thing, because they don’t like that her EEGs were normal and consider her seizures to be “not-seizures” or “benign seizures” or “we have NFI seizures” that are “probably not causing any damage” only NOW, my baby obviously cannot SEE properly, so can we cut the crap with any kind of “may not be causing any damage” and just treat things?

Which is what I think our Paediatrician will do when we tell him what the opthamologists say about Evie’s eyes. He’s a good Paed, even if I am frustrated right now, and he is doing the best for Evelyn, balancing her age against the side effects of doing nothing (and let’s be clear, her eyes have been problematic since the seizures started, so it’s not something we could have prevented) versus the outcome of giving a small baby addictive, side effect-y drugs.

Rock, meet hard place.