Seizures

A lot of people ask me how Evelyn is doing and I smile and nod and say “About the same.” Then they mention that she looks great, and I agree. Then we discuss the fact that I am glad she’s such a happy baby, before we move onto different topics.

This is true. She is about the same. She is happy. She does look great. None of these things are lies, but also, they are only the tip of the iceburg of truth that we’re living.

You see, Evelyn is about the same because her development has slowed significantly. She’s about the same, because she’s doing all the same things. Nothing is new. Nothing changes.

Or maybe that’s a lie. Because she can roll over now, so that’s new. And her tongue thrust finally eased, so that she can eat solid food. That’s new. But those are the only major milestones we’ve hit in the last four months and I’m left looking at my baby, wondering what exactly is going on inside her brain, with its strangely firing synapses.

Evelyn smiles at me. She giggles when I kiss her tummy or her neck. She likes to grab at my hair. She’s pretty much right on track for a three month old baby – except for the fact that she is eight months old now.

She still has seizures while she sleeps. She can’t control her hands. She arches her back and flings herself backwards with no warning. Her body can be a little bit spastic, in the politically correct useage of the word.

We still don’t know what is wrong. We’re in a holding pattern until she gets older and her team of medical professionals can start to pinpoint exactly which skills are missing and how. In ten days we see a new physiotherapist for the first time for a comprehensive assessment. In six weeks, we see her Paediatrician again. I expect he will notice immediately how Evelyn isn’t progressing.

We don’t see a neurologist again until she’s twelve months old – unless she magically learns to walk in the next four months. (OH HAHAHAHAHAAAAAAAAAAAAAA, I make myself laugh.)

So, we wait. I will watch my daughter trying to master the art of moving her body, and twist and turn, flinging herself backwards when she wants to reach forwards. I’ll watch her frustration, and kiss her hands, and massage her muscles. I’ll encourage her to learn to use her hands, and hopefully, we can find out what works for Evelyn.

It’s stifling, this inactivity. People want to know how she is, but how can I tell them she’s no different than she was three months ago? That when they tell me she looks good, what they really mean is that she doesn’t look odd. That she isn’t visibly disabled and therefore “it will all be okay”. How do I tell them that I think her vision is still strange, and that her depth perception is out, when they tell me “but look, she can see me moving”.

I can’t say any of this, not now, not yet.

We’re still waiting to see. Wait and see. Watch and wait.

These are my least favourite things to do.

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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.

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